reflection about research ethics

[Reflections about research ethics in humans]

Affiliation.

• 1 Instituto de Ética en Salud, Facultad de Medicina, Universidad Nacional Mayor de San Marcos, Lima, Perú. [email protected]
• PMID: 21152738
• DOI: 10.1590/s1726-46342010000300018

In order to propose the necessary moral reflection about the personal responsibility that each researcher assumes when he performs scientific research in human beings, an essay of moral and scientific themes is presented, using information from the relevant scientific and ethical literature. Around the concepts of heteronymous and autonomous ethics, it is proposed that ultimately and beyond informed consent and training courses on research ethics, the behavior of the researcher will depend on his/her own moral responsibility, tested in different situational contexts. Two explanatory models are used in order to understand this dynamic, the one of normality in mental health and the one of moral development of men. We conclude that the research process in human beings is a scientific and moral activity that, depending in various situations of conflicts of interest, will always test the researcher's moral controls.

Publication types

• English Abstract
• Biomedical Research / ethics*

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• v.7(2); 2018 Apr

Ethical dilemmas and reflexivity in qualitative research

Anne-marie reid.

1 Leeds Institute of Medical Education, University of Leeds, Leeds, UK

Jeremy M. Brown

2 Postgraduate Medical Institute, Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, UK

Julie M. Smith

3 Nuffield Orthopaedic Centre, Oxford, UK

Alexandra C. Cope

4 Frimley Health NHS Foundation Trust, Surrey, UK

Susan Jamieson

5 School of Medicine, Dentistry & Nursing, Glasgow University, Glasgow, UK

For medical education researchers, a key concern may be the practicalities of gaining ethical approval where this is a national or local requirement. However, in qualitative studies, where the dynamics of human interaction pervade, ethical considerations are an ongoing process which continues long after approval has been granted. Responding to ethical dilemmas arising ‘in the moment’ requires a reflexive approach whereby the researcher questions his/her own motivations, assumptions and interests. Drawing on empirical studies and their experiences in academic and clinical research practice, the authors share their reflections on adhering to ethical principles throughout the research process to illustrate the complexities and nuances involved.

Objectives and findings

These reflections offer critical insights into dilemmas arising in view of the ethical principles driving good conduct, and through domains which distinguish between procedural ethics, situational ethics, ethical relationships and ethical issues in exiting the study. The accounts consider integrity and altruism in research, gatekeeping and negotiating access, consent and confidentiality, power dynamics and role conflict, and challenges in dissemination of findings. The experiences are based on a range of examples of research in a UK context from managing difficult conversations in the classroom to video-ethnography in the operating theatre.

Discussion and conclusions

These critical reflections make visible the challenges encountered and decisions that must be taken in the moment and on reflection after the event. Through sharing our experiences and debating the decisions we made, we offer insights into reflexivity in qualitative research which will be of value to others.

A Qualitative Space highlights research approaches that push readers and scholars deeper into qualitative methods and methodologies. Contributors to A Qualitative Space may: advance new ideas about qualitative methodologies, methods, and/or techniques; debate current and historical trends in qualitative research; craft and share nuanced reflections on how data collection methods should be revised or modified; reflect on the epistemological bases of qualitative research; or argue that some qualitative practices should end. Share your thoughts on Twitter using the hashtag: #aqualspace

Introduction and context

The importance of procedural ethics, gaining initial approvals for research studies, is well-established and guided by the principles enshrined in the Declaration of Helsinki and the Nuremberg code [ 1 ]. Ethical approval procedures are often viewed as a ‘hurdle’ to be surmounted, and arguably overshadow full consideration of the challenges of process ethics, the ethical tensions and dilemmas which arise throughout the practice of research. This paper aims to bring insights into ethical dilemmas which permeate research at all stages, from initial approval through data collection, dissemination of the findings and exiting the study [ 2 ]. These insights, developed from the authors’ personal accounts of their own practices, are derived from a range of experiences of medical education research in different settings.

Procedural ethics in medical education is guided by the codes of practice devised by education research bodies such as the British Educational Research Association (BERA) and the American Educational Research Association (AERA). These codes are applied by ethics committees who provide scrutiny at a national or local level depending on the context and nature of the research. For example, in the Netherlands, a national framework to review medical education research has been developed by the Ethical Review Board of the Dutch Association for Medical Education (NVMO) [ 3 ]. In the UK, ethical scrutiny is conducted under the auspices of university ethics committees, except where there is patient involvement, in which case clinical ethics committees are involved.

Until relatively recently, medical education research has been given something of a rough ride by ethics committees more used to considering clinical interventional research [ 4 ], although such committees are now becoming more familiar with educational research and the ethical issues arising. Guidelines for ethical behaviour are based on the philosophical principles of beneficence , do good; non-maleficence, do no harm; respect for autonomy, self-determination; and equity, treat fairly [ 5 ]. These principles are intended to guide thinking in applying for ethical approval by encouraging researchers to anticipate the ethical tensions and dilemmas which might arise during the study.

Guiding principles

The formulation of ethical research principles is based on the deontological approach proposed by Kant [ 6 ], whereby moral duty should be guided by principles which transcend circumstances. The utility of these principles in guiding practice is subject to critique on the basis that they may encourage following the ‘letter’ rather than the ‘spirit’ of the principle, or may in fact be too restrictive, limiting the scope and value of the research [ 7 ]. In addition, the consequences of research outputs are not entirely within the control of the researcher, and so the principle of non-maleficence, do no harm, may be difficult to achieve in all cases [ 8 ].

Guillemin and Gillam [ 9 ] distinguish between the domains of procedural ethics (gaining approval) and that of process ethics (ethics in the course of practice). In doing so they recognize that ethics are essentially situational, and that ethically sensitive issues occur ‘in the moment’ as research unfolds [ 7 , 9 ]. Tracy [ 2 ] elaborates further in proposing four domains to guide thinking; procedural ethics (approval processes), situational ethics (the research context), ethical relationships (dynamics between the researcher and participants) and ethical issues in exiting the study (completion and disseminating findings). This approach recognizes the ongoing, unanticipated challenges which might arise beyond gaining approval for the study and which require a high degree of researcher ‘reflexivity’ in responding ethically.

Shacklock and Smyth [ 10 ] describe reflexivity as the conscious revelation of the underlying beliefs and values held by the researcher in selecting and justifying their methodological approach. From an epistemological perspective, a reflexive approach recognizes knowledge as constructivist, developed throughout the research process and contingent upon existing understandings and beliefs [ 11 ]. Transparency about the researcher’s position and potential biases and assumptions is vital in judging accounts of qualitative research and the authenticity of the findings. This paper seeks to illustrate reflexivity in managing ethical tensions and dilemmas through accounts of ‘practitioner-researchers’, that is, those with a role in academic or clinical practice who also conduct research.

This researcher position is one with a working knowledge of the field of study, a shared identity with participants, sensitivity to competing priorities and as one known to participants outside of the researcher role. This practitioner-researcher position is valuable in developing practice insights. However, it may equally bring assumptions and biases which have ethical implications but which are not commonly made explicit in medical education research. The authors seek to address this by offering critical insights into their personal ethical dilemmas drawing on the ethical principles proposed by Beauchamp and Childress [ 5 ], and with reference to the framework proposed by Tracy [ 2 ]. As stated, the latter concerns procedural ethics (formal approval procedures), situational ethics (issues arising specific to context), relational ethics (awareness of researcher actions on others) and exiting ethics (considerations arising beyond data collection). The authors’ accounts (indicated by their initials) include gatekeeping and negotiating access in procedural ethics, debated by JB and SJ; questions of consent and confidentiality in situational ethics experienced by AC; power dynamics and role conflict in ethical relationships debated by AMR and JS and issues of confidentiality and anonymity which challenged AC in dissemination of her findings.

Procedural ethics

Procedural ethics, the formal approvals required for a study to commence, are dependent on the justification for the study and a stated commitment to adherence to ethical principles. Even before embarking on the formal application, the good intentions of the research need to be carefully weighed up against the vested interests of the researcher involved. Tracy [ 2 ] advocates that researchers practise (self-) reflexivity ‘even before stepping into the field … [to assess] … their own biases and motivations’ (P. 842). An illustration of this is provided by JB, an experienced academic and researcher in postgraduate medical education. He reflects on his role conflict as gatekeeper in pursuit of integrity and altruism in research practice. Gatekeepers are those who give access to a research field, or, ‘are able to control or limit researchers’ access to the participants’ [ 12 , P. 452]. Another aspect of the gatekeeper’s dilemma is described by SJ in relation to her role in managing the research of others. This follows JB’s story.

Integrity and altruism

JB: The Universities UK ‘Concordat to Support Research Integrity’ [ 13 ] calls for integrity and research excellence throughout the duration of a project. However, one, often hidden complexity, concerns the personal motivation of the researcher, a troubling question for me in leading a research program funded by a postgraduate medical department. Despite beneficent intentions and careful adherence to research governance processes, I retain lingering doubts as to the extent to which hidden coercive influences impact on participant recruitment.

Medical education research is relatively poorly funded and time pressured as many researchers are practitioners with substantial academic and/or clinical roles and responsibilities. As such, these researchers need to reflect upon, and be transparent about, their competing interests [ 14 , 15 ]. Although this issue has been highlighted for some time in the field, change has been slow, as evidenced by the relatively low number of competing interests disclosed in a survey of medical education related journals [ 16 ]. Walsh [ 17 ] suggests that medical education researchers may not deliberately fail to disclose, but rather fail to recognize their own competing interests due to the ‘bias blind spot’.

Bearing this in mind, I am conscious of relying heavily on the goodwill of participants with whom I may have relationships before, during and after the study. I believe that the participant should be exercising judgement based on the validity of the study in which they are consenting to participate, rather than on that relationship. Despite the best intentions to contribute to new knowledge, there must be an open and honest realization that research outputs are key benchmarks to measure how effectively researchers are performing. This dilemma was brought home to me while teaching postgraduate students, one of whom posed the question, ‘Can research ever be truly altruistic?’

Initially I was unsure of how to respond, but on reflection, admitted that in my experience, despite endeavouring to be honest and truthful to our participants, there may be a conflict between our personal motivations as researchers and reliance on the goodwill of participants. These reflections are unlikely to lead to any dramatic changes in practice; however, recognizing this potential conflict can at least remind us never to take for granted the commitment of willing participants.

Protection versus paternalism

SJ: Balancing the aims of beneficence, the value of research to the medical education community, with the principle of non-maleficence, avoiding harm, is an ethical conundrum which I have frequently encountered in managing an undergraduate medical education program. As a member of the medical education research community I am keen to support research, but am conflicted when faced with frequent requests to include our students as study participants. This particularly arises with survey research which is often the subject of such requests. The issue of survey fatigue is well-recognized [ 18 ], so much so, that my institution instigated a policy to restrict this [ 19 ]. The policy aims to prevent survey fatigue and ensure that students remain well-disposed to completing important internal and external surveys including the National Student Survey [ 20 ], the results of which are important key performance indicators for the institution.

On becoming director of a masters’ program in health professions education, tensions arising from my role as gatekeeper were exacerbated. The needs of the postgraduate students to recruit study participants potentially conflicted with the interests of the undergraduates. The availability of undergraduates as study material for postgraduate students and career academics is not new, and two decades ago undergraduate psychology students were described as ‘a captive population with little power’ [ 21 P. 74]. In a similar vein, Keune et al. [ 22 ] noted ethical issues arising in a scenario whereby a surgical resident introduced a mandatory team/trauma simulation training session. There was no indication that this session was also the basis of a research study until the trainees were presented with consent forms on arrival, clearly suggesting possible coercion. Another study explored the motivation of Indian medical students to participate in research conducted in their university and hospital learning environments [ 23 ]. Of the 300 participants, 61% admitted to participating against their genuine wishes, of which 26% agreed because a faculty member had asked them and 4% because they had not appreciated the right to refuse.

These examples demonstrate a tension between protecting potential participants and respecting their autonomy to choose whether or not to participate in research. One solution as gatekeeper may be to give agreement for participants to be recruited via a general email to a whole cohort, but prohibit purposive sampling of a specific group who may feel more pressurized. Managing access to students as participants highlights for me the ‘grey area’ between protecting the vulnerable and behaving paternalistically in upholding ethical principles.

Situational ethics

After formal approval and access has been granted, unanticipated ethical questions may arise due to the specific nature of the research setting [ 1 ]. In clinical settings data collection occurs within the course of clinical practice which brings specific challenges. AC, a colorectal surgeon whose doctoral research investigated teaching and learning in the operating theatre grappled with issues of consent in the context of patient autonomy.

Issues of consent in the operating theatre

AC: My research followed principles of naturalistic inquiry [ 24 ], capturing the phenomenon of teaching and learning in the operating theatre, as it happened, through ethnographic observation, video and audio-recordings [ 25 ]. One challenge of capturing naturalistic data is gaining prior consent of participants, as it can be difficult to predict who may be co-present within an operating theatre. In my study there was potential for inadvertent participants to be captured during data collection, defiling the research principle of autonomy—the right to determine participation or non-participation [ 5 ].

One approach to uphold autonomy was in the choice of microphone for audio capture: the ‘XTag RevoMic’ which has a short capture range. This meant that talk at the operating table of consenting participants was recorded but that others entering the operating theatre were not inadvertently recorded. The recording was taken from a camera placed within the operating lamp for open surgery, and from a laparoscopic (internal body) camera so that the site of the operation was captured but not the faces of those present. Assurance of this was key to maintaining trust between myself as researcher and the clinical teams involved.

Potential patient participation in the study also raised issues of autonomy. The study explored interactions between surgeon and trainee, but the patient’s body cavity formed the backdrop for video recordings of hand movements and the interactions involved. This meant that the patient would be co-present during the data collection episode although under anaesthetic. Murphy and Dingwall [ 26 ] state that ‘one must distinguish between those for whom the research is likely to be consequential and those who are tangential to it’. The ethics committee deemed that patient participants were peripheral, and that for this non-interventional research, patient consent was not required. General Medical Council (GMC) guidance specifies that doctors may use recordings such as laparoscopic video streaming or images of internal organs for secondary purposes (such as research), without seeking consent from patients, provided that the recordings are captured as part of patient care and are anonymized [ 27 ]. In this study recordings were captured by the research team and therefore were not a routine part of patient care.

The clinician participants, in particular the nursing staff, expressed very strong feelings that the patient should also be recognized as having the right to consent in making an informed judgement in whether or not to participate. Despite this presenting an extra hurdle for me as researcher, in my surgeon role I was used to gaining patient consent for operations and agreed that patients should be given the right for their procedure to be part of the study or otherwise. I discussed the study with patients, providing a bespoke ‘plain language’ Participant Information Sheet and consent form. Inevitably this raised separate ethical difficulties as patients were anxious that by consenting, they were agreeing to be operated on by a learner surgeon (given that the study was investigating clinical teaching and learning). I had to deal with patient vulnerability sensitively, explaining that participation in the study or otherwise would have no bearing upon their clinical treatment, or the person performing the operation, emphasizing that this was a non-interventional study. In this way the autonomy of patients to choose to participate was respected. No patient declined to be part of the study on this basis.

Ethical relationships

The issues arising described by AC highlight the complex nature of ethical relationships in research. The researcher-participant dyad is dependent upon any existing relationship with potential participants and a reassessment of the status of this in the context of the study aims and demands [ 28 ]. Managing power dynamics, role conflict and role boundaries in relationships are explored here firstly by AMR and then by JS, each of whom experienced such issues in their respective doctoral studies.

Power dynamics and role conflict

AMR: Power asymmetry is a feature of research with the balance generally considered to be in favour of the researcher who directs the process while the participant responds [ 28 , 29 ]. Ben-Ari and Enosh [ 30 ] argue that this power is actually co-constructed through the process, as participants exert power in shaping knowledge through choosing what to reveal. An illustration of such power dynamics occurred during my study on partnership working in the development and design of a new healthcare degree, commissioned by the Health Authority [ 31 ]. As program leader, I led the development and delivery of the curriculum and managed the team involved. This brought me the benefit of access to the university team and senior healthcare managers as participants, but also role conflict in managing relationships as the study progressed.

I was acutely aware of my potential biases and power dynamics as both researcher and manager; when interviewing members of my own team I was sensitive to the ‘ethics of care’ [ 1 ]. A specific dilemma arose during an interview with a lecturer when I asked a question from the schedule. Rather than respond to this, the interviewee took the opportunity to air personal grievances. The interview may be viewed as a dialogic process, and my sense of control of the dialogue was challenged by the participant taking ‘counter-control’ [ 11 ] in deviating from the schedule. I was unsure of how to react, feeling it inappropriate as researcher to challenge or make a direct response. In order to avoid distractions and regain control, I steered the conversation back to the interview schedule.

Although in the moment I felt that I was acting ethically in prioritizing the quality of the research [ 32 ], the issue troubled me later. It seemed inappropriate to raise the grievance with the interviewee in my management role after the event as I had assured participants of the confidentiality of the proceedings. With hindsight, given the power asymmetry in the manager-employee relationship, I now believe that seeking a later opportunity to discuss the grievances would have respected the autonomy of the staff member and provided duty of care. On reflection, a different interviewer may have avoided such circumstances occurring, but in this instance I was expected to conduct my own interview as part of the doctoral training.

Managing multiple identities in an acute setting

JS: My doctoral study involved conducting a multi-site, observational, longitudinal research study, focusing on clinical reasoning development in final year medical students as they transitioned to junior doctors 1 . This required managing a number of boundary issues through my overlapping roles of clinician, researcher, teacher and mentor. As I observed participants in both simulated and clinical workplaces, the ethical challenges of these roles developed. I had to ensure that participants could opt in or out of various clinical scenarios as well as at different data collection points. I also had to be mindful of my own potential biases and the need to treat them equitably, neither advantaging nor disadvantaging them as participants in the study. Furthermore, I had to consider the secondary participants who were the patients and ward staff in each workplace. Given the opportunistic and serendipitous nature of the workplace, audio-recorded consent was initially sought in the moment from secondary participants, followed by full written consent.

My ontological position, in particular my predominantly insider role, required a high degree of self-reflexivity [ 2 ]. Despite extensive prior approvals and permissions, I anticipated and faced ethical dilemmas arising from my relationships as both an ‘insider’ (a middle grade clinician), and an ‘outsider’ (clinical settings beyond my own workplace and field of expertise). The potential for role conflict also arose between my clinical and researcher role. It was agreed that should an emergency occur within the workplace, I would intervene if necessary in my clinical role in accordance with the GMC’s Good Medical Practice [ 33 ]. Furthermore, I would identify a senior member of staff in advance for each shift to whom I could report any instances of unsafe medical practice. Participants were made aware of my role and ethical position as this may have influenced their decision to be involved.

Ethical dilemmas arising during the study included critical incidents ranging from observing unsafe medical practice to observing primary participants being expected to deal with situations beyond their capabilities. One example occurred in observing a junior doctor who was covering obstetrics, an area in which they had little expertise. The junior doctor had been ‘emergency-paged’ to review an obstetric patient following a significant bleed, where no obstetrician was available. Walking to the emergency, as I unpicked the participant’s clinical reasoning, it became clear that this individual lacked the experiential knowledge and practical skills required. I felt very concerned by this and decided in the moment, that in the interests of non-maleficence (avoiding harm), I would switch role and take an active part in the patient management. Fortunately, shortly after our arrival at the emergency, an appropriate senior doctor appeared and no intervention on my part was required. Had there been unsafe practice, I would have reported the incident following the protocols in place to protect patient safety. Although in this case the situation was resolved, recognising the vulnerability of the junior doctor, I alerted the clinical supervisor to the incident to provide support and ensure that the clinical team debriefed after the event.

Exiting the study

Ethical dilemmas may continue beyond the study as exemplified by AC, who faced challenging issues in maintaining confidentiality and anonymity in dissemination of her findings which included video and audio data.

Challenges in dissemination of findings

AC: Observational field notes and interview transcripts from my study could be presented at academic meetings in anonymized format. However, data from synchronized video and audio, although names were removed, could not be fully anonymized as voices, gestures and body language rendered individuals identifiable. As a clinical researcher, I was able to select clips and the appropriate mode of presentation for particular audiences. For example, at surgical academic meetings where there was a high chance of identification of participants, which might make them vulnerable, I used subtitled video clips to illustrate research findings. This meant that intonation, pitch and rise and fall of delivery within speech were lost; however, the identity of participants was concealed.

For presentation at medical education meetings there was a lower chance of participant identification. The audience was particularly interested in analysis of exact timing of ‘teaching talk’, the guidance given and subsequent responses of the trainee surgeon including pauses, hesitations and hand movement. To enable this, with support I digitally altered audio data so that the pitch of speakers’ voices was modified to conceal identity. On occasion, specific clips with names removed but not completely anonymized format were presented using speakers’ own voices. Express written permission was received from participants for use of that particular clip, recognizing my ability as practitioner-researcher to gauge the likely sensitivity of the data and the audience. For publication purposes, Jeffersonian [ 34 ] transcription notation was used. This technique records pauses, intonation, pace and stresses in the delivery of speech so that the transcript indicates not only what is said, but also how it is said. These different methods of presenting the data were selected in the spirit of non-maleficence, avoiding potential harm to participants, acknowledging that complete anonymity could not be entirely guaranteed. This was made clear to participants at the outset.

Discussion and conclusion

Qualitative research, by its nature, involves immersion in situations and relationships which are complex and unpredictable. These personal accounts have explored the nuanced nature of ethical tensions and personal dilemmas which have emerged for us, as practitioner-researchers beyond the approval process and arising throughout the research. Although some issues are particular to specific situations, there are common features in the challenge of thinking and acting ethically as a qualitative researcher. These include striving to maintain integrity and altruism, upholding autonomy in gaining consent and access, balancing protection of vulnerable participants with paternalism, managing multiple roles and power relations and avoiding harm in dissemination of findings.

The common thread running through our experiences is the sometimes troubling questions raised which may be difficult to foresee, and even when anticipated, require a response ‘in the moment’ [ 9 ], which has ethical consequences. Although the risks involved in JS’s experience of managing an obstetric situation as a clinician-researcher on the wards seem high, and the consequences are immediate, JB’s classroom conversations regarding integrity and altruism in research may have far reaching consequences. Training those learning the craft of research carries significant responsibility as it is key to how future researchers understand ethical principles and manage their own conduct in applying them.

The principles of beneficence, non-maleficence, justice and equity should guide action, but the balancing of these principles effectively from the initial approval through to completion of the study and beyond requires a truly reflexive approach. Through sharing our reflections and insights we hope to raise awareness, not only of the challenges of conducting qualitative research ethically, but also of its value when conducted in a rigorous, ethically informed, thoughtful and reflexive manner. This has implications for those undertaking qualitative enquiry as well the gatekeepers who manage access and for those who prepare and train the researcher of the future.

Biographies

BDS, MEd, PGCert, EdD PFHEA, is Associate Professor of Medical Education, University of Leeds. Her clinical background is in General Dental Practice. She has a Professional Doctorate in Education, is a Principal Fellow of the Higher Education Academy and is a member of the Association for the Study of Medical Education (ASME) Research Committee.

BA (Hons), PGCE, PhD, is Professor of Clinical Education at Edge Hill University. He leads a medical and dental education research program funded by Health Education England North West.

BMSc (Hons), MBChB, MRCS, PGCert, MFST (Ed), PhD, is a Specialty Registrar in Trauma and Orthopaedic Surgery at The Nuffield Orthopaedic Centre, Oxford. She has a PhD in medical education for which she received ASME’s New Researcher Award.

MBBS, MEd, PhD, FRCS, is a Consultant General and Colorectal Surgeon at Frimley Health. She has a PhD in medical education and is a module lead on a Masters in Surgical Science and Practice at the University of Oxford.

BSc (Hons), PGCert, EdD, PhD, is Professor of Health Professions Education at Glasgow University. She has a Professional Doctorate in Education and is Chair of the Education Research Committee of the Association for the Study of Medical Education (ASME).

Conflict of interest

A.-M. Reid, J.M. Brown, J.M. Smith, A.C. Cope and S. Jamieson declare that they have no competing interests.

1 Smith, JM. The Transition from Final Year Medical Student to Foundation Doctor: The Clinical Reasoning Journey. Dundee; 2015 (unpublished thesis)

Editor’s Note: Commentary by: E. Paradise, 10.1007/s40037-018-0414-0.

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• Published: 25 May 2024

Neither right nor wrong? Ethics of collaboration in transformative research for sustainable futures

• Julia M. Wittmayer   ORCID: orcid.org/0000-0002-4738-6276 1 , 2 ,
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Transformative research is a broad and loosely connected family of research disciplines and approaches, with the explicit normative ambition to fundamentally question the status quo, change the dominant structures, and support just sustainability transitions by working collaboratively with society. When engaging in such science-practice collaborations for transformative change in society, researchers experience ethical dilemmas. Amongst others, they must decide, what is worthwhile to be researched, whose reality is privileged, and whose knowledge is included. Yet, current institutionalised ethical standards, which largely follow the tradition of medical ethics, are insufficient to guide transformative researchers in navigating such dilemmas. In addressing this vacuum, the research community has started to develop peer guidance on what constitutes morally good behaviour. These formal and informal guidelines offer a repertoire to explain and justify positions and decisions. However, they are only helpful when they have become a part of researchers’ practical knowledge ‘in situ’. By focusing on situated research practices, the article addresses the need to develop an attitude of leaning into the uncertainty around what morally good behaviour constitutes. It also highlights the significance of combining this attitude with a critical reflexive practice both individually and collaboratively for answering questions around ‘how to’ as well as ‘what is the right thing to do’. Using a collaborative autoethnographic approach, the authors of this paper share their own ethical dilemmas in doing transformative research, discuss those, and relate them to a practical heuristic encompassing axiological, ontological, and epistemological considerations. The aim is to support building practical wisdom for the broader research community about how to navigate ethical questions arising in transformative research practice.

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Introduction.

There is a growing recognition that current research has failed to adequately address persistent societal challenges, which are complex, uncertain, and evaluative in nature (Ferraro et al., 2015 ; Loorbach et al., 2017 ; Saltelli et al., 2016 ). Along with this recognition come calls for science to help address these increasingly urgent and complex challenges faced at a global and local level, such as biodiversity loss, climate change, or social inequalities (Future Earth, 2014 ; Parks et al., 2019 ; WBGU, 2011 ). This call is echoed from within academia (Bradbury et al., 2019 ; Fazey et al., 2018 ; Norström et al., 2020 ) and has also translated into corresponding research funding (Arnott et al., 2020 ; Gerber et al., 2020 ; Vermeer et al., 2020 ). The fundamental premise is that addressing complex societal challenges requires more than disciplinary knowledge alone and extends beyond the confines of academia (Gibbons et al., 1994 ; Hirsch Hadorn et al., 2008 ; Lang et al., 2012 ). That is, addressing them necessitates interactive knowledge co-production and social learning with societal actors to produce actionable and contextually embedded knowledge for societal transformations (Chambers et al., 2021 ; Hessels et al., 2009 ; Schäpke et al., 2018 ). This trend has prompted a (re)surge of socially engaged approaches to research, including transdisciplinary research, phronetic social sciences, participatory research, action- and impact-oriented research, and transformative research. These approaches involve collaboration between academics and various societal stakeholders, such as policymakers, communities, enterprises, and civil society organisations.

However, often, such socially engaged research approaches are at odds with the institutional traditions designed for monodisciplinary knowledge production. Transformative research, for instance, does not claim an objective observer position; instead, it explicitly embraces a normative orientation. Its goal, as many have argued, is to facilitate transformative societal change towards justice and sustainability by recognising and addressing the deep and persistent socio-ecological challenges inherent in our current society (Mertens, 2007 ; Wittmayer et al., 2021 ). This motive to transform existing systems through collaborative research, in our view, obliges researchers to be more critical and vigilant in their decisions (Fazey et al., 2018 ). As we will present later in this paper, many of these decisions constitute ethical dilemmas, such as who decides what ‘good’ research is, whose knowledge to prioritise, or who should engage and under which circumstances. These ethical dilemmas are only poorly addressed by the ethical review processes in place at most universities, which remain dominated by linear and positivist framings of knowledge production and research design (Wood and Kahts-Kramer, 2023 ). Consequently, transformative researchers are often left struggling to choose “ between doing good (being ethically responsive to the people being researched) and doing good research (maintaining pre-approved protocols) ” (Macleod et al., 2018 , p. 10). The translation of the values and principles of transformative research into formal and informal ethical guidelines is only starting (Caniglia et al., 2023 ; Fazey et al., 2018 ; West and Schill, 2022 ).

Confronting these ethical dilemmas calls for greater reflexivity and dialogue with ourselves, among researchers, between researchers and their collaborators (including funders and professionals), and between researchers and the institutions within which they operate (Finlay, 2002 ; Horcea-Milcu et al., 2022 ; Pearce et al., 2022 ). Attesting to this call, the authors of this paper engaged in a ‘collaborative autoethnography’ (Lapadat, 2017 ; Miyahara & Fukao, 2022 ; Phillips et al., 2022 ) to explore the following research question: Which ethical dilemmas do researchers face in research collaborations that seek to catalyse transformations? And how do they navigate these in their collaborative practice? Thus, as an interdisciplinary group of researchers affiliated with academic research institutes, we shared, compared, and discussed our experiences concerning ethical dilemmas in our transformative research endeavours. In these discussions, we considered our interactions, engagements, and relationships with collaborators along with how institutional rules and norms influence or constrain our practices and relations.

This paper begins with an overview of transformative research and the challenges that arise when working collaboratively. It also testifies to the formal and informal attempts to support researchers in navigating those challenges (“Ethics in transformative research”). From there, we develop the argument that formal or informal guidelines are most meaningful when they have become a part of the practical wisdom of researchers. When they are, they support researchers in leaning into the uncertainty of what constitutes morally good behaviour and in navigating collaboration ‘in situ’. Inspired by Mertens ( 2017 ), we relate our own dilemmas to the three philosophical commitments that comprise a research paradigm: axiology, ontology, and epistemology (“Transformative research practice investigated through collaborative autoethnography”, also for an elaboration of the terms). We share concrete dilemmas while embedding and relating them to a broader body of knowledge around similar dilemmas and questions (“Collaboration in transformative research practice”). We close the paper by pointing to the importance of bottom-up ethics and the need to embed those into revalued and redesigned ethical standards, processes, and assessments that can provide external guidance and accountability (“Concluding thoughts”).

Ethics in transformative research

In this section, we first introduce transformative research (TR) in terms of its underlying values and its ontological and epistemological premises (Mertens, 2007 , 2017 ) (“Introducing transformative research”). We then connect it to its institutional context, where ethical standards and procedures fit the linear production of knowledge, leading to tensions with TR practices (“Institutional context: Formal ethical standards and processes”). Finally, we outline how the research community tries to address this misfit and the felt need for understanding what constitutes morally ‘right’ behaviour by providing peer guidance on the ethical conduct of TR (“Peer context: Informal heuristics for transformative research”).

Introducing transformative research

TR refers to a broad and loosely connected family of research disciplines and approaches, with the explicit normative ambition to fundamentally question the status quo, change the dominant structures, and support just sustainability transitions (Hölscher et al., 2021 ; Jaeger-Erben et al., 2018 ; Mertens, 2021 ; Schneidewind et al., 2016 ; Wittmayer et al., 2021 ). Transformative researchers thus start from the basic premise that “ all researchers are essentially interveners ” (Fazey et al., 2018 , p. 63). Consequently, they are explicit about the kind of normative orientation of their interventions to further a social justice and environmental sustainability agenda. There is no denying the fact that such research approaches can also be used with a different normative mindset and value orientation, which will have other ethical consequences.

TR builds on methodological and theoretical pluralism that knits together kindred, or even conflicting, perspectives to complement disciplinary specialism (Hoffmann et al., 2017 ; Horcea-Milcu et al., 2022 ; Midgley, 2011 ). As such, it also comes as a diverse phenomenon, and where such diversity is “ not haphazard […] we must be cautious about developing all-embracing standards to differentiate the ‘good’ from the ‘bad ’” (Cassell and Johnson, 2006 , p. 783). Such an ontological stance involves letting go of the idea of absolute truth and the need to tightly control the research process and outcomes (van Breda and Swilling, 2019 ). Instead, TR encourages continuous societal learning to generate actionable knowledge and transformative action that manifests in real-world changes in behaviours, values, institutions, etc. (Bartels and Wittmayer, 2018 ; Hölscher et al., 2021 ). In doing so, TR is often based upon pragmatist assumptions about the ways knowledge and action inform one another, generating contingent knowledge in a process of action and experimentation (Harney et al., 2016 ; Popa et al., 2015 ). The research process serves as a means to assess ideas in practical application, blending a critical realist stance on socially constructed reality with acknowledging subjectivism and the existence of multiple realities (Cassell and Johnson, 2006 ).

TR also represents an epistemological shift from the notion of the distanced, presumably unbiased, and all-knowing researcher and recognises individuals as sense-makers, agency holders, and change agents (Horcea-Milcu et al., 2022 ; Hurtado, 2022 ). Collaboration enables the elicitation of different kinds of knowledge, including scientific knowledge across disciplines as well as phronetic and tacit knowledge from practice. It aims at capturing the plurality of knowing and doing that is relevant to specific contexts and actors (Frantzeskaki and Kabisch, 2016 ; Nugroho et al., 2018 ; Pohl, 2008 ). This sort of mutual social learning supports joint sense-making and experimental processes. These then invite us to rethink existing situations, (re)define desired futures, and (re)position short-term action (Fazey et al., 2018 ; Lotz-Sisitka et al., 2016 ; Schneider et al., 2019 ). The co-creation of knowledge and action can increase ownership, legitimacy, and accountability and can help facilitate trust-building among diverse societal groups (Hessels et al., 2009 ; Lang et al., 2012 ). The latter is an essential ingredient for tackling complex societal problems during times of discrediting science and the rise of populist, antidemocratic movements (Saltelli et al., 2016 ).

Institutional context: formal ethical standards and processes

The institutional environment is challenging for researchers engaging in TR for multiple reasons; one challenge is the formal ethical standards and processes. Current approaches to ethical assessment in social science emerged from several international conventions in the field of medical ethics (BMJ, 1996 ; General Assembly of the World Medical Association, 2014 ; National Commission for the Protection of Human Subjects of Biomedical, & Behavioural Research, 1979 ). Most formal research ethics reviews adopt the four principles of Beauchamp and Childress ( 2001 ), which include: (1) non-maleficence by attempting to not harm others; (2) respect for autonomy by attempting to provide information about the research that allows decisions to be taken; (3) beneficence by attempting to achieve useful outcomes outweighing the risks of participation; and (4) justice by attempting fairness in participation and distribution of benefits. These principles have found their way into formal ethical reviews, often practicing value-neutral and utilitarian ethics. This approach is debatable for TR approaches (Detardo-Bora, 2004 ) and seems more effective at protecting research institutions (foregrounding bureaucratically controllable compliance) than research participants (Christians, 2005 ). Indeed, many engaged in TR have raised concerns that neither these principles nor their formal translation account for the particularity, situatedness, epistemic responsibilities, and relationality that are key to the conduct and ethics of TR (Cockburn and Cundill, 2018 ; Lincoln, 2001 ; Parsell et al., 2014 ; Wijsman and Feagan, 2019 ). In the following paragraphs, we highlight several tensions between the understanding of research, as it informs many ethical standards in place, and an understanding of TR.

First, a pre-defined versus an emerging research design. Due to its real-world orientation, TR needs to be able to deal flexibly with changing contexts and windows of opportunity that might arise (Hurtado, 2022 ). Due to the relationality of TR, it requires ongoing interaction and negotiation between researchers and their collaborators (Bartels and Wittmayer, 2018 ; Bournot-Trites and Belanger, 2005 ; Williamson and Prosser, 2002 ). One-off general consent at the start (e.g., through informed consent forms), as is common for ethical review processes, is thus at odds with the emergent design of TR and is also argued to be insufficient in maintaining participants’ autonomy (Smith, 2008 ). As an alternative, Locke et al. ( 2013 ) posit that informed consent should be seen as a collective, negotiated, continuous process, especially in collaborative action research.

Second, assumed neutrality versus dynamic aspects of researchers’ positionalities. Ethical review protocols are geared towards upholding the objective position of researchers as outsiders in the investigated context, ensuring that they will not influence this research context in any way. However, TR explicates its ambition to influence real-world problems through engagement, acknowledging that research needs to confront existing hegemonic orders and emancipate those involved through a democratic process (Cassell and Johnson, 2006 ). Furthermore, researchers co-design, facilitate, and participate in the process of knowledge co-production, making them also participants and subjects of their own research (Janes, 2016 ). To enhance the validity and integrity of the research, Wood, and Kahts-Kramer ( 2023 ), among others, suggest that transformative researchers explicitly state their positionality. This involves reflecting on their assumptions, values, and worldviews.

Third, the primacy of knowledge generation versus the importance of action. Ethical review protocols, given their historical roots in medical practice, assume that the act of falsifying, generating, or improving theories alone would benefit participants, collaborators, and the public at large. Yet, researchers engaged in TR take a step further, seeking to develop both scientific and actionable knowledge in a way that addresses persistent societal problems and stimulates social change (Bartels and Wittmayer, 2018 ; Caniglia et al., 2021 ; Greenwood and Levin, 2007 ). As put by Wood and Kahts-Kramer ( 2023 , p. 7), “ the ethical imperative of participatory research is to bring about positive change and generate theory from reflection on the purposeful action ”. This approach strengthens the responsiveness of research to societal and political needs (Stilgoe et al., 2013 ).

Transformative researchers thus perceive a lack of utility and guidance from ethical standards and processes in place that have institutionalised a certain understanding of research and related sets of principles. Following Clouser and Gert ( 1990 ), one might question whether such institutionalisation of a moral consciousness is possible in the first place. They argue that so-called ‘principlism,’ “ the practice of using ‘principles’ to replace both moral theory and particular moral rules and ideals in dealing with the moral problems that arise in medical practice ” (Clouser and Gert, 1990 , p. 219), has reduced the much-needed debates on morality vis-à-vis research and results in inconsistent and ambiguous directives for morally ‘right’ action in practice. In response to the vacuum left by institutionalised ethics standards and processes and the perceived necessity of defining morally ‘right’ behaviour, the research community is turning inward to develop peer guidance on ethical conduct in TR. The subsequent section highlights several contributions to this endeavour.

Peer context: Informal heuristics for transformative research

Transformative researchers have started offering general principles or frameworks as informal heuristics for what constitutes ‘ethical’ TR. Caniglia et al. ( 2023 ), for example, argue that practical wisdom can serve as a moral compass in complex knowledge co-production contexts, and propose four central ‘wills’ for researchers to follow: committing to justice, embracing care, fostering humility, and developing courage. Under the framing of post-normal or Mode-2 science (Funtowicz and Ravetz, 1994 ; Gibbons et al., 1994 ; Nowotny et al., 2003 ), Fazey et al. ( 2018 ) present ten ‘essentials’ of action-oriented research on transforming energy systems and climate change research Footnote 1 . One of these essentials highlights that, as researchers, we intervene, and that failing to acknowledge and engage with this reality opens the doors to sustaining unjust power relations or positioning science as apolitical. To address this, they echo Lacey et al.’s ( 2015 , p. 201) assertion that such acknowledgment means “ be[ing] transparent and accountable about the choices made about what science is undertaken, and how it is funded and communicated ”.

Looking beyond sustainability scholarship, other researchers have also developed practical actions or strategies for enhancing their ethical behaviours in the research collaboration. Taking the unique attributes of community-based participatory research, Kwan and Walsh ( 2018 , p. 382) emphasise a “ focus on equity rather than equality ” and on practicing a constructive or generative use of power “ rather than adopting a power neutral or averse position ”. Others provide guiding questions to think about the forms and quality of relationships between researchers and participants (Rowan, 2000 ) and to support the navigation of the relationship between action research and other participants (Williamson and Prosser, 2002 ). Such questions should cover not only process-focused questions but also the risks and benefits of the intended outcomes, as well as questions around purpose, motivation, and directionalities (Stilgoe et al., 2013 ). Others also propose broader guidelines in which they pay attention to non-Western and non-human-centred virtue ethics, such as ‘Ubuntu’ (I am because we are) (Chilisa, 2020 ). In forwarding climate change as a product of colonisation, Gram-Hanssen et al. ( 2022 ) join Donald’s ( 2012 ) call for an ethical relationality and reiterate the need to ground all transformation efforts on a continuous process of embodying ‘right relations’ (see also Chilisa, 2020 ; Wilson, 2020 ).

Yet, as argued before, ethics in collaboration cannot be approached through developing principles and strategies alone. Not only might they not be at hand or on top of one’s mind when being immersed in a collaborative practice, which often requires a certain reaction on the spot. They also cannot or should not replace the quest for what morality means within that collaboration (cf. Clouser and Gert, 1990 ). Further questions have been prompted about the necessary skillsets for realising ethical principles in practice (Jaeger-Erben et al., 2018 ; Pearce et al., 2022 ; West and Schill, 2022 ). Caniglia et al. ( 2023 ), for example, propose that researchers need skills such as dealing with plural values with agility and traversing principles and situations with discernment. Others focus on competency building among research participants (Menon and Hartz-Karp, 2023 ). The subsequent section turns to the point of supporting researchers in navigating collaboration ‘in situ’ and in leaning into the uncertainty around what morally good behaviour constitutes—in concrete TR contexts that are plural and uncertain.

Transformative research practice investigated through collaborative autoethnography

Transformative research as a situated practice.

The aforementioned institutionalised ethical standards and procedures, as well as the informal peer heuristics, are two vantage points for guidance on what constitutes morally good behaviour for transformative researchers. These existing vantage points are either developed based on theoretical and philosophical framings or based on researchers’ actual experiences of doing TR. They do offer a repertoire to explain and justify positions and decisions in ethical dilemmas during research collaborations. However, it is not until such heuristics or principles have become part of the practical knowledge of researchers that they are useful for actual TR in situ.

Considering research more as a practice situates it as a social activity in a ‘real-world context’. In such a practice, researchers often make decisions on the spot. Moreover, due to the constraints posed by available time and resources, researchers often engage in what Greenwood and Levin ( 2007 , p. 130) term “ skilful improvisation ” or “ pragmatic concessions ” (Greenwood and Levin, 2007 , p. 85). This “ improvisational quality ” (Yanow, 2006 , p. 70) of the research process does not mean it is not carried out systematically. Such systematicity is based on “ action repertoires ” (Yanow, 2006 , p. 71) that researchers creatively use and remake (Malkki, 2007 ). This improvisation is thus neither spontaneous nor random; rather, it builds on and is based on the practical knowledge of researchers (formed through their experiences and their situatedness) guiding their behaviours in normatively complex situations. Using ‘organic design’ (Haapala et al., 2016 ), the researchers blend real-world settings into formal spaces, fostering bricolage and driving sustainable institutional evolution over time. Such practical knowledge includes “ both ‘know how’ knowledge (techne), […] and ethical and political-practical knowledge (phronesis)” (Fazey et al., 2018 , p. 61). Research can thus be considered a craft (Wittmayer, 2016 ): the skilful mastery of which develops over time through learning based on experience and reflection (Kolb, 1984 ).

Such experiential learning should go beyond reflecting on what lies in view to include seeing how attributes of the viewer shape what is being viewed (cf. Stirling, 2006 ). Engaging in TR includes being one’s own research instrument, which puts a researcher’s positionality, i.e., their social, cultural, and political locations, centre stage. It reminds us that researchers are “ located within networks of power and participate in the (re)configuration of power relations ” (Wijsman and Feagan, 2019 , p. 74). This positionality, the sum of what makes a person and how this informs their actions (Haraway, 1988 ; Kwan and Walsh, 2018 ; Marguin et al., 2021 ), is increasingly being acknowledged in academia. It has a long history in feminist theories, participatory action research, and the critical pedagogy of decolonisation. Positionality refers to the “ researcher’s self-understanding and social vision ” (Coghlan and Shani, 2005 , p. 539) as well as their motivation to ‘better society’ (Boyle et al., 2023 ; Kump et al., 2023 ) and how these affect how researchers interpret ethical guidelines, conduct research, interpret data, and present findings. Consequently, one’s positionality can make certain research choices seem unethical. Mertens ( 2021 , p. 2), for example, considers “ continuing to do research in a business-as-usual manner” unethical as it makes the researcher “ complicit in sustaining oppression ”.

Acknowledging one’s positionality and normative role is part of a broader reflexive practice of critically questioning, reflecting on, and being transparent about values, as well as taking responsibility and accountability for research processes and outcomes (Fazey et al., 2018 ; Pearce et al., 2022 ; Wijsman and Feagan, 2019 ). Such a reflexive practice can support individual researchers to act ethically, but more so, to improve our collective ways of being and doing (i.e., an ethically informed research community) by constantly connecting what should be (i.e., the guidelines) and how it has been done (i.e., the practices) through critical reflexive practices. This improvement at the collective level includes a re-valuation and redesign of existing processes and guidelines for morally good research.

A collaborative autoethnography

Responding to this need for critical reflexivity, we engaged with our storied experience in navigating concrete and immediate ethical dilemmas that we have encountered when collaborating with others for TR in practice. We did so through collaborative autoethnography, a multivocal approach in which two or more researchers work together to share personal stories and interpret the pooled autoethnographic data (Chang et al., 2016 ; Lapadat, 2017 ; Miyahara and Fukao, 2022 ). Collaborative autoethnography is appropriate for our inquiry as it broadens the gaze from the dilemmas of the self to locate them within categories of experience shared by many. Interrogating our personal narratives and understanding the shared experiences through multiple lenses not only facilitates a more rigorous, polyvocal analysis but also reveals possibilities for practical action or intervention (Lapadat, 2017 ). Collaborative auto-ethnography can thus be considered an approach that moves “ beyond the clichés and usual explanations to the point where the written memories come as close as they can make them to ‘an embodied sense of what happened’ ” (Davies and Gannon, 2006 , p. 3). It also supports developing researcher reflexivity (Miyahara and Fukao, 2022 ).

Overall, we engaged in two types of collaborative activities over the course of a period of 18 months: writing and discussing. In hindsight, this period can be divided into three phases: starting up, exploring, and co-working. The first phase was kicked off by an online dialogue session with about 30 participants convened by the Design Impact Transition Platform of the Erasmus University Rotterdam in April 2022. The session was meant to explore and share experiences with a wide range of ethical dilemmas arising from TR collaboration in practice. Following this session, some participants continued deliberating on the questions and dilemmas raised in differing constellations and developed the idea of codifying and sharing our experiences and insights via a publication. In a second phase, we started writing down individual ethical dilemmas, both those we had discussed during the seminar and additional ones. These writings were brought together in an online shared file, where we continued our discussions. This was accompanied by meetings in differing constellations and of differing intensity for the researchers involved.

A third phase of intense co-work was framed by two broader online sessions. During a session in May 2023, we shared and discussed a first attempt at an analysis and sense-making of our individual dilemmas. During this session, we discerned the heuristic by Mertens et al. (2017) and discussed how it could be helpful in structuring our different experiences. Inspired by Mertens et al. (2017), we re-engaged with the three critical dimensions of any research paradigm to scrutinise our philosophical commitments to doing TR. A re-engagement with issues of axiology (the nature of ethics and values), ontology (the nature of reality), and epistemology (the nature of knowledge), as illustrated in Table 1 , allowed us to reconcile our ethical dilemmas and opened a space for a more nuanced understanding and bottom-up approach to the ethics of collaboration in TR. In moving forward, the heuristic also helped to guide the elicitation of additional dilemmas. This session kicked off a period of focused co-writing leading up to a second session in December 2023, where we discussed writing progress and specifically made sense of and related the ethical dilemmas to existing literature and insights.

Especially in this last phase, as we interacted dialogically to analyse and interpret the collection of storied experiences of ethical dilemmas, our thinking about the ethics of collaboration has evolved. It went beyond considering the inadequacy of institutional rules and how we navigated those, towards acknowledging their interplay with individual positionality and a researcher’s situated practice. Closer attention to the contexts within which the ethical dilemmas have arisen has led us to return to our philosophical commitments as transformative researchers and reflect on our assumptions about collaboration and research from a transformative standpoint.

The author team thus comprises a high proportion of those participating in the initial session, as well as others who joined the ensuing collective interpretation and analysis resulting in this paper. An important characteristic of the authors is that we are all affiliated with academic research institutions and that all but one of these institutions are based in high-income countries. It is in this context that we have shared our experiences, which is also limited by it. As such, this paper will mainly speak to other researchers affiliated with academic institutions in comparable settings. Acknowledging these limitations, we are from different (inter)disciplinary backgrounds Footnote 2 , nationalities, and work in different national settings and urban and rural locations. This diversity of contexts impacts the constellation of ethical dilemmas that we were faced with. We thus synthesise lessons from disparate yet still limited contexts, whilst remaining cognisant of the ungeneralisable nature of such a study.

Collaboration in transformative research practice

At the heart of our collaborative autoethnographic experience was the sharing and sensemaking of ethical dilemmas. In this section, we share those dilemmas (see Tables 2 – 4 ) clustered along the three philosophical commitments that served to deepen the analysis and interpretation of our storied experience. We embed our dilemmas with the broader body of knowledge around similar issues to discuss ways forward for practical knowledge around ‘what is good’ TR practice and ‘how to’ navigate ethical dilemmas.

Axiological dimension

Axiology is the study of value, which concerns what is considered ‘good’, what is valued, and most importantly, what ‘ought to be’. The axiological standpoint of TR is to address persistent societal problems and to contribute to transitions towards more just and sustainable societies. The commitment to knowledge development and transformative actions is also shaped by different personal judgements, disciplinary traditions, and institutional contexts. Together, these raise ethical concerns around the shape and form of research collaborations, the research lines being pursued, and where and for whom the benefits of the research accrue. Table 2 provides the details of the ethical dilemmas (described as encounters) that we discuss in the following.

Taking up a transformative stance goes hand in hand with individual researchers holding different roles at the same time (Hoffmann et al., 2022 ; Horlings et al., 2020 ; Jhagroe, 2018 ; Schut et al., 2014 ). Often resulting from this, they also perceive a wide range of responsibilities towards diverse groups (stakeholders, peers, the academic community, etc.). This is why transformative researchers face questions of who is responsible for what and whom in front of whom, and these questions influence and are influenced by what they consider the ‘right’ thing to do in relation to others in a collaborative setting. As a result, their axiological position is constructed intersubjectively in and through interactions unfolding in the communities of important others. It is thus relational and may differ depending on ‘the other’ in the research collaboration (Arrona & Larrea, 2018 ; Bartels and Wittmayer, 2018 ). Encounter 1 illustrates this through a constellation of the research collaboration that holds the potential to become a conflict of interest.

Such conflicts of interest can also occur in the very choice of which ‘community’ is being considered as the main beneficiary of the collaboration. The emphasis on action in TR, especially with regards to the principles of beneficence and justice that we mentioned in “Ethics in transformative research”, can increase this dilemma. Researchers are to continuously evaluate their (perceived) obligations. This includes, for example, obligations towards the scientific community (contributions to the academic discourse via publications) vs. obligations towards stakeholders (being a provider of free practical advice or consultant) vs. scientific requirements (academic rigour and independence) vs. stakeholder requests (answering practical questions). Researchers have to position themselves in this contested field of what ‘good research’ and ‘useful outcomes’ mean and sometimes question or challenge their peers or the academic system at large (see also Kump et al., 2023 ). This is the very question raised by Encounter 2 , where researchers are forced to decide which stakeholders’ values and needs should be prioritised in transforming clinical practice and improving the lives of patients.

Moreover, a similar prioritisation between the interests of different groups needs to be made between whether to create knowledge according to traditional scientific standards of systematicity and rigour or supporting collaborators in developing usable knowledge. This is surely a dilemma that arises from being embedded in an institutional context that judges according to different standards, but it also arises from the double commitment of TR to knowledge development and transformative action (Bartels et al., 2020 ). Huang et al. ( 2024 ) for example show how axiological assumptions serve as the base from which different notions of research excellence (e.g., scientific rigour, ‘impactful’ scholarship) are operationalised and supported institutionally. Encounter 3 reflects a similar dilemma as the lecturer juggles conflicting priorities that are inherent to the axiological concerns of TR. That is, can the goals of knowledge development in the traditional academic sense and transformative action be achieved simultaneously? The answer provided by Encounter 3 seems to suggest a redefinition of what ‘good’ scientific knowledge is, for immediate action to be possible.

Yet, perceived responsibilities—towards human and non-human actors, but also towards the own university, the institutional arrangements in which we partake, and what we understand as ethical behaviours—exist in a close, interdependent relationship with our inner ethical standards. Creed et al. ( 2022 , p. 358) capture this “ collection of sedimented evaluations of experiences, attachments, and commitments ” as an ‘embodied world of concern’. This can illustrate the complexity of how an individual researcher’s values, emotions, or sentiments tend to intertwine, and can sometimes clash, with the concerns of their communities and the social-political situation where they operate. Given that one’s embodied world of concern is not fixed but characterised by emerging pluralism, as Encounter 4 illustrates, the consequence of an ethical decision tends to fall more heavily on those with less axiological privilege, such as early career researchers or those located in regions where the opportunity for scientific publishing is limited (Kruijf et al., 2022 ).

As transformative researchers seek systemic change, their values cannot help but influence their research collaboration, including the choice of whom they work with and which methods to use. However, the intention of strengthening the responsiveness of research to societal and political needs through TR collaborations risks being co-opted by the interests of those funding research activities (Bauwens et al., 2023 ; Strydom et al., 2010 ). As illustrated in Encounter 5 , this might cause dilemmas when being approached by stakeholders (e.g., oil and gas companies) to do research, which may not sit well with the subjective judgements of the researcher or with an overall need for transformative change. Researchers can be caught in an odd position and left to wonder whether a compromise of values is worth the risks and end gain, depending on whether a positive contribution can still be achieved. Negotiating our axiological stances with collaborators thus allows researchers to be seen as social beings embedded in patterns of social interdependence, who are not only “ capable and can flourish ” but also “ vulnerable and susceptible to various kinds of loss or harm [and] can suffer ” (Sayer, 2011 , p. 1).

Ontological dimension

Ontology is the philosophical study of being, which concerns the nature of reality and what really exists. TR can start from diverse ontological stances, including critical realist, pragmatist, or subjectivist perspectives. This includes a strong acknowledgement that “ there are multiple versions of what is believed to be real ” (Mertens, 2017 , p. 21). Yet, such a pluralist stance remains a theoretical exercise up until the point that researchers ought to define what are ‘the things’ that need to be transformed and into what. In this situation, at least two debates arise: Do ‘the things’ exist based on a specific ontological commitment, such as the divide between measurable constructs and socially constructed understandings of risks and inequities. And is the existence of ‘the things’ universal or merely a construct of a specific time, space, or social group? As the researcher illustrated in Encounter 6 (see Table 3 for the detailed encounters), if maths anxiety and eco-anxiety are recognised as ‘real’ because of growing clinical research, why can’t the research team accept the construct of ‘science anxiety’ that their teacher collaborators have perceived in their classrooms? Collaboration thus remains especially challenging when researchers strive for academic rigour from an empiricist standpoint while having to cross paths or work with individuals from different ontological positions (Midgley, 2011 ).

Commitments to working collaboratively with members of ‘marginalised’ and ‘vulnerable’ communities add to this dilemma, as researchers are bound to encounter the ethical dilemmas of whose reality is privileged, whose reality can or should be legitimised and considered ‘true’ in a TR process (Kwan and Walsh, 2018 ). In Encounter 7 , for instance, research participants do not recognise themselves as ‘climate displaced persons’ or ‘climate migrants’ because they have a long history of migration for a plethora of reasons. Now, should researchers continue using this term with a view to gain political attention to the issues of climate change, or should they abstain from doing so? How does this relate to their commitment to transformative action, including shaping political agendas? The intention to target system-level change in TR (Burns, 2014 ; Kemmis, 2008 ) also means that researchers ought to interrogate the mechanisms that inflict certain perceived realities on the powerless in the name of good causes (Edelman, 2018 ; Feltham-King et al., 2018 ), the ways in which these narratives are deployed by powerful stakeholders (Thomas and Warner, 2019 ) and how these are translated into (research) action.

Moreover, research and action on ‘scientific’ problems can deflect attention from other problems that local communities most care about or lead to unexpected, even negative, implications for some stakeholders. With increasing pressure on the societal impact of research and funding tied to certain policy goals, the issues of labelling and appropriation might only perpetuate a deficit perspective on specific groups (Eriksen et al., 2021 ; Escobar, 2011 ; van Steenbergen, 2020 ). Encounter 8 highlights that, without caution, well-intended efforts risk perpetuating harm and injustice —upholding a certain deficit perspective of the community in question. Communities accustomed to ‘helicopter’ research, where academics ‘fly-in, fly-out’ to further their careers at the expense of the communities, may be reluctant to collaborate. This necessitates transparency, active listening, deliberative involvement, and trust building (Adame, 2021 ; Haelewaters et al., 2021 ). It also reminds us of the ‘seagull syndrome’,’ which attests to the frustration felt by community members towards outsider ‘experts’ making generalisations and false diagnoses based on what is usually a superficial or snapshot understanding of local community dynamics (Porter, 2016 ). In some incidents, transformative researchers may need to redesign collaboration processes in TR that centre on the realities of people in the study (Hickey et al., 2018 ).

Epistemological dimension

Epistemology is the philosophical study of knowledge, and its primary concern is the relationship between the knower and what can be known. Transformative researchers usually work at the interface of disciplines, each with their own ideas on what constitutes ‘scientifically sound’ but also ‘socially robust’ or ‘actionable’ knowledge (Mach et al., 2020 ; Nowotny et al., 2003 ). Many thus hold the epistemological assumption that knowledge is created through multiple ways of knowing, and the processes of knowledge generation need to recognise how power inequities may shape the normative definition of legitimate knowledge. This stance raises ethical concerns about whose knowledge systems and ways of knowing are included, privileged, and/or legitimised in TR practice. Moreover, it raises concerns about ways of ensuring a plurality of knowledge spaces (Savransky, 2017 ).

Using an epistemological lens to interrogate collaborative practice in TR can illuminate a wide range of ethical dilemmas associated with longstanding critiques of Western norms and ‘scientific superiority’ (Dotson, 2011 ; Dutta et al., 2022 ; Wijsman and Feagan, 2019 ). It also brings to the fore the power dynamics inherent within collaborative processes of TR for sustainability (de Geus et al., 2023 ; Frantzeskaki and Rok, 2018 ; Kanemasu and Molnar, 2020 ; Kok et al., 2021 ; Strumińska-Kutra and Scholl, 2022 ). A particular ethical challenge is related to the fact that it is typically researchers from the Global North who design and lead research collaborations, even when these take place in the Global South. This immediately creates “ an inequality that is not conducive to effective co-production ” and requires “ dedicated commitment to identify and confront the embodied power relations [and] hegemonic knowledge systems among the participants in the process ” (Vincent, 2022 , p. 890). See Table 4 for details on the ethical dilemmas that we discuss in the following.

Concerns about epistemic justice (Ackerly et al., 2020 ; Harvey et al., 2022 ; Temper and Del Bene, 2016 ) and interpretation of voices (Komulainen, 2007 ) are largely rooted in the deficit narratives about the capacity of certain groups for producing knowledge or for being knowers. Encounter 9 shows how easily certain voices can be muted as not being considered to speak from a position of knowledge. Research processes can usefully be expanded to include disinterested or disengaged citizens (Boyle et al., 2022 ), or those opposing a project or initiative so as to lay bare the associated tensions of knowledge integration and co-production (Cockburn, 2022 ). Encounter 10 illustrates that such silencing also relates to the question of who holds legitimate knowledge. This research has three parties that may hold legitimate knowledge: the researcher, the corporation, and the local community. However, the extent to which the researchers’ knowledge is heard remains unclear since the corporation does not consider it in its actions. It also illustrates common insecurities about what one can attain using certain research methods. The reliance of political institutions and citizens on expert advice, particularly when dealing with acute crises (e.g., Covid-19 pandemic), also tends to exacerbate the depoliticisation of decisions (Rovelli, 2021 ).

Moreover, TR practice nearly inevitably results in privileging certain ways of knowing and knowledges. Researchers make space for shared action or dialogue around a certain issue, inviting certain groups but not others, and choosing certain methods and not others. Encounter 11 illustrates the issue of favouritism in research collaboration. It elaborates on how thoughtful facilitation can intervene to level the playing field and provide a way out of the dilemma going beyond the question of whose benefit it serves. This facilitation enables meaningful collaboration among all parties involved. Particularly in policy sectors dominated by political and economic considerations, which exhibit strong vested interests, there is a need to foster meaningful and safe participation (Nastar et al., 2018 ). Skilled facilitation is crucial for uniting marginalised groups, preparing them to deal with the intricacies of scientific jargon and technological hegemony (Djenontin and Meadow, 2018 ; Reed and Abernethy, 2018 ). The contextual dimensions of collaborators, their associated worldviews, and the social networks in which they are situated are important epistemological foundations. Yet, these are not static and can shift over time throughout collaborative partnerships.

As explicated in “Introducing transformative research”, TR represents an epistemological shift to recognise researchers as sense-makers, agency holders, and change agents. This philosophical commitment can create dilemmas for ‘embedded researchers’ seeking to strengthen the science-policy interface. Encounter 12 illustrates how occupying a dual role — to dive into action and to publish scientifically — can be at odds. This encounter alludes to the fact that transformative researchers often navigate different roles, which come with different, at times conflicting, epistemological priorities and ways of knowing (e.g., roles as a change agent and a reflective scientist, the approach of ‘Two-Eyed Seeing’ by Indigenous scholars) (Bulten et al., 2021 ; Temper et al., 2019 ; Wittmayer and Schäpke, 2014 ). Importantly, such roles change over time in a TR practice and over the course of a researcher’s career (McGowan et al., 2014 ; Pohl et al., 2017 ).

Involving diverse stakeholders in knowledge co-production also inevitably leads to ethical questions concerning how to integrate diverse knowledge systems, especially those using multi-method research designs or models to aid decision-making (Hoffmann et al., 2017 ). Models can be useful in providing scenarios, however, they are constructed by people based on certain assumptions. These assumptions serve as the fundamental lenses through which complex real-world systems are simplified, analysed, and interpreted within the model framework. Despite the well-intention of researchers, the practice of establishing a shared understanding and reaching consensus about key constructs in a model is often unattainable. As Encounter 13 illustrates, participatory model building requires the capacity and willingness of all involved to knit together kindred, or even conflicting, perspectives to complement disciplinary specialism.

We explored the dilemmas of researchers pertaining to knowing ‘how to’ act in a certain situation and considering ‘what is doing good’ in that situation. Transformative researchers (re)build their practical knowledge of what doing research means through cultivating a reflexive practice that puts experiences in context and allows to learn from them. From a meta-perspective, doing TR is a form of experiential learning (Kolb, 1984 ) and doing TR involves traversing an action research cycle: experiencing and observing one’s action research practice, abstracting from it, building knowledge, and experimenting with it again to cultivate what has been referred to as first person inquiry (Reason and Torbert, 2001 ).

Concluding thoughts

In this article, we set out to explore which ethical dilemmas researchers face in TR and how they navigate those in practice. We highlighted that researchers engaging in TR face a context of uncertainty and plurality around what counts as ethically acceptable collaboration. With TR emphasising collaboration, it becomes important to discern the notion of ‘right relations’ with others (Gram-Hanssen et al., 2022 ), to attend to the positionality of the researcher, and to reconfigure power relations. Importantly, with TR emphasising the need for structural and systematic changes, researchers need to be aware of how research itself is characterised by structural injustices.

Using a collaborative autoethnography, we shared ethical dilemmas to uncover the messiness of collaborative TR practice. We established how guidance from institutionalised reference systems (i.e., ethical review boards and procedures) currently falls short in recognising the particularities of TR. We described how the research community generates informal principles, or heuristics to address this gap. However, we also appreciated that in actual collaboration, researchers are often ‘put on the spot’ to react ‘ethically’ in situ, with limited time and space to withdraw and consult guidelines on ‘how to behave’. Such informal heuristics are thus but a start and a helpful direction for developing the practical knowledge of researchers on how to navigate a plural and uncertain context.

This practical knowledge is based on an awareness of the uncertainty around what constitutes morally good behaviour and builds through experience and a critical reflexive practice. Our aim is not to share another set of principles, but rather to highlight the situatedness of TR and the craftsmanship necessary to navigate it and, in doing so, build practical knowledge through experiential learning and insight discovery (Kolb, 1984 ; Pearce et al., 2022 ). Such a bottom-up approach to research ethics builds on the experiences of researchers engaging in TR as a situated practice vis-à-vis their personal motivations and normative ambitions and the institutional contexts they are embedded in. This approach nurtures the critical reflexivity of researchers about how they relate to ethical principles and how they translate this into their normative assumptions, practical hypotheses, and methodological strategy.

Next to continuous learning, this critical reflexivity on TR as craftmanship can enhance practical wisdom not only for the individual but also for the broader community of researchers. We envision such wisdom not as a set of closed-ended guidelines or principles, but rather as a growing collection of ethical questions enabling the TR community to continuously deepen the interrogation of their axiological, ontological, and epistemological commitments (see Table 5 ). Only through this ongoing process of reacting, reflecting, and questioning—or as referred to by Pearce et al. ( 2022 , p. 4) as “an insight discovery process”—can we collectively learn from the past to improve our future actions.

However, such a bottom-up approach to ethics can only form one part of the answer, set in times of an evolving research ethics landscape. Researchers engaging in transformative academic work cannot and should not be left alone. Additionally, researchers’ ethical judgements cannot be left to their goodwill and virtuous values alone. Therefore, another important part of the answer is the carving out of appropriate institutions that can provide external guidance and accountability. This will require nothing less than structural and cultural changes in established universities and research environments. Rather than having researchers decide between doing good and doing ‘good’ research, such environments should help to align those goals.

From this work, questions arise on how institutional environments can be reformed or transformed to be more conducive to the particularities of TR, and to help nurture critical reflexivity. We highlight the critical role that ethic review boards can play in starting to rethink their roles, structures, and underlying values. Practical ideas include employing mentors for transformative research ethics, having ethical review as a process rather than as a one-off at the start of the project, or continuously investing in moral education. Thus, we underscore the importance of individual reflexivity and learning. However, we would like to set this in the broader context of organisational learning, and even unlearning, among academic institutions to overhaul our academic systems in response to the urgent imperative of tackling socio-ecological challenges globally. In this transformative endeavour, careful consideration of how the ethics of research and collaboration shape academics’ socially engaged work is indispensable.

The full set of essentials is the following: (1) Focus on transformations to low-carbon, resilient living; (2) Focus on solution processes; (3) Focus on ‘how to’ practical knowledge; (4) Approach research as occurring from within the system being intervened; (5) Work with normative aspects; (6) Seek to transcend current thinking; (7) Take a multi-faceted approach to understand and shape change; (8) Acknowledge the value of alternative roles of researchers; (9) Encourage second-order experimentation; and (10) Be reflexive. Joint application of the essentials would create highly adaptive, reflexive, collaborative, and impact-oriented research able to enhance capacity to respond to the climate challenge.

Disciplines include amongst others anthropology, business administration, climate change adaptation, cultural economics, economics, economic geography, education, health sciences, human geography, international development studies, philosophy, political science, sociology, urban planning.

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Julia M. Wittmayer and Ying-Syuan Huang drafted the work for important intellectual content, substantially contributed to the concept and design of the work, and contributed to the analysis and interpretation of data for the work. Kristina Bogner, Evan Boyle, Katharina Hölscher, and Timo von Wirth substantially contributed to the concept or design of the work and contributed to the analysis or interpretation of data for the work. Tessa Boumans, Jilde Garst, Yogi Hendlin, Mariangela Lavanga, Derk Loorbach, Neha Mungekar, Mapula Tshangela, Pieter Vandekerckhove, and Ana Vasues contributed to the analysis or interpretation of data for the work.

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Wittmayer, J.M., Huang, YS.(., Bogner, K. et al. Neither right nor wrong? Ethics of collaboration in transformative research for sustainable futures. Humanit Soc Sci Commun 11 , 677 (2024). https://doi.org/10.1057/s41599-024-03178-z

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A self-reflection on research ethics and design process

Chatgpt, artificial intelligence (ai), machine learning (ml), 4d printing, and metaverse are not just buzzwords anymore in this era of digital and organizational transformation, but have also impacted our research methodologies, thinking processes, and theoretical frameworks.

Sheng-Hung Lee

Sheng-Hung Lee is a designer working and studying at MIT, and Board Director at IDSA. He is trained as an industrial designer and electrical engineer, and his approach to problem-solving is influenced by his passion for how design and technology impact and can be integrated into society.

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With these external changes in emerging technologies and socioeconomic shifts, finding adaptable and scalable solutions has become increasingly important. And how we find suitable solutions in an ethical, inclusive, and respectful way is also critical, since we need to put more effort into taking essential desires, needs, and core topics around people and with people into account.

Therefore, the purpose of the article is to discuss the intersection between research ethics and the design process in facing these complicated and systemic social-technological problems and how we can ethically identify people’s new needs, adapt our behavior, modify the study process, and prepare and envision the foreseeable future.

While discussing the principles and high-level observations, I will share some of my Ph.D. research projects and master thesis collaborating with the Massachusetts Institute of Technology (MIT) AgeLab [1], my previous case studies working with two design consultancies,  IDEO [2] and Continuum [3], as well as my side projects.

The primary goal of the article is to reflect on my learnings in the research phase through the lens of research ethics and the design process. I will also explore how I as a designer deal with privacy-related topics and how designers integrate an ethic of care into design projects, as well as the cost and value on the individual, institutional, and societal levels.

The principle of care and design research ethics

In the process of design research, we as design researchers don’t have the same amount of transparent information about every one of the research participants. Usually, we might know more details than those being interviewed in advance before the user interview or experiments, leading to a different power dynamic between the interviewer and interviewee. It also opens new opportunities to think about our research ethics and how we can improve them.

In Ethnography and Virtual Worlds: A Handbook of Method [4], the authors proposed eight principles of care:

• Informed consent
• Mitigation of institutional risk
• Sex and intimacy
• Compensation
• Taking leave
• Accurate portrayal

In the Little Book of Design Research Ethics [5], Jane Fulton Suri, IDEO Partner Emerita mentioned three timeless principles that guide most of our work: 1) respect, 2) honesty, and 3) responsibility to discuss how to integrate human-centered design and design process with ethics.

While conducting experiments in the field, I want to explore the three most common and useful principles of care among all these bullet points and materials: 1) informed consent, 2) anonymity, and 3) compensation. These echo my personal design journey in my profession.

INFORMED CONSENT: reach an agreement and make the process transparent

We can view informed consent on two levels: institutional and individual. Normally in school,  Institutional Review Boards (IRBs) or Human Subjects Offices are administrative units in charge of research ethics.

When I did the human subject research for my master’s thesis project for the first time, I had to finish my COUHES (Committee on the Use of Humans as Experimental Subjects [6]) application first by taking a few online courses with quizzes not only to help me understand the research protocol specifically focusing on ethics, but also to think broadly about the purpose of the research, research method, recruitment criteria, deployment strategy, and the place and format to conduct the research.

At school, most of the research I worked on was low-risk and qualified for low-risk review or exemption. To kick off a research project at MIT, I needed consent from not only my research participants, but also from the institute (MIT).

A formal consent form is important to inform your research participants or the school administrative unit that you are conducting the specific research with the permission of both participants and the school. A properly designed consent form includes content, the clarity of information, and the research preparation process, which is critical before conducting any experiments.

A consent form is like a contract to inform participants or the school in advance about the things you want to do, e.g., quoting people’s comments, revealing people’s identities, recording the interview sessions and other documentation details.

Essentially, informed consent helps us as researchers or designers to reach a constructive agreement and ensure the research process is transparent and respectful.

ANONYMITY: anonymously contribute personal data to improve systems collectively

Anonymity, as a principle of care, touches on people’s private and sensitive information. I’m also curious about how people perceive the concept of anonymity during the research.

When working on my master’s thesis at MIT, I developed smart IoT slippers for an aging population. A major part of it consisted of interviewing expert participants about data privacy. The experts from the interviews came from the field of product design, technology, and education.

Some people didn’t want their smart devices to collect and store data including personal preferences and personal information, or upload them to the cloud; extreme users said that they allowed smart devices to process their information locally without connecting to the internet; still, some had no problem having their data used either anonymously or not.

[ Read also A look into Design leadership at MIT Laboratories ]

However, some people’s responses impressed me and enabled me to consider the tension between individual data privacy and collective benefit, e.g., how to make a better and smarter system. They want to contribute their anonymous data to improve the overall smart IoT ecosystem. For the purpose of creating a better system, participants’ data can be analyzed, but it needs to be processed anonymously.

In this example, these experts still wanted to contribute to the research for better and smarter IoT devices. But the trust and values lie in one premise, the power of control: do they have the option to decide whether they want to share their data and how, anonymously or not?

COMPENSATION: indicate respect to appreciate participants’ time and knowledge

In the early stage of research, we tend to recruit potential interviewees or invite survey participants by starting with our personal connections: family, friends, or colleagues. We consider the initial phase a pilot test to refine the discussion/interview guide and overall interview flow and questions.

As our personal connections are relatively more accessible than hiring a professional recruiter to help us in the recruiting process, we take it for granted and normally invite people to join for free or with a small fee. It can easily overlook the bottom line of research ethics, since we shouldn’t utilize our personal connections e.g., friends or family to leverage their time for free for the project.

If we “unpaid” or “underpaid” people for their almost-free labor such as their time and knowledge, it would cause a vicious cycle. There is no such thing as a free lunch. We need to be mindful that our research behavior aligns with our research ethics.

Giving compensation is critical for interviewers and interviewees, since both sides will spend their time, energy, and money on the research. For example, an interviewee needs to pay attention for an hour or even longer to join the session with the interviewer to share their thoughts, valuable working experiences, and creative ideas, whereas interviewers need to prepare provocative questions, decent-length surveys, and interactive activities to engage with the participants to capture the conversation.

Compensation can be considered a sign of mutual respect. It’s a medium to connect researchers and participants that indicates more than just giving money to the interviewee; it also demonstrates professionalism and appreciation as an implicit way to transfer invaluable knowledge and experience from participants.

[ Read also From Brainstorming to Bodystorming: an applied ethnographic perspective to view co-creation workshops ]

Before I start to ask our participants or interviewees questions, I feel more solid and safe if I give them incentives or gift cards. When I worked at IDEO and looked for expert interviewees for a kitchen hood product design project, we made sure the recruiter’s fee, expert interviewees’ fee, and potential travel expenses are all covered in the recruitment budget.

SUMMARY: solve complicated challenges with ethical, inclusive, and respectful approaches.

The short reflection was inspired by the MIT graduate course: Qualitative Research Methods (CMS.702/802) by Professor T.L. Taylor. It helped me think as a designer with a passion for design in academia and research to promote the importance of integrating research ethics into the design process.

The article only briefly covers three principles of care by exploring 1) informed consent: how to reach an agreement and make the process transparent, 2) anonymity: why people want to anonymously contribute personal data collectively to improve systems, and 3) compensation: what indicates respect for participants’ time and knowledge.

When we face complicated and systemic challenges, figuring out solutions is only one aspect. We also need to consider how to come up with solutions with ethical, inclusive, and respectful approaches. The principle of care is a great starting point.

• Coughlin, J. F., 2023, “MIT AgeLab” [Online]. Available here
• IDEO, 2023, “IDEO” [Online]. Available here
• Zaccai, G., 2023, “Continuum” [Online]. Available here
• Boellstorff, T., Nardi, B., Pearce, C., and Taylor, T. L., eds., 2012, Ethnography and Virtual Worlds: A Handbook of Method , Princeton University Press, Princeton. Available here
• Suri, J. F., and IDEO, eds., 2015, The Little Book of Design Research Ethics , IDEO, Place of publication not identified. Available here
• Massachusetts Institute of Technology, 2023, “Committee on the Use of Humans as Experimental Subjects” [Online]. Available here

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• Published: 23 May 2024

The concept of intersectionality in bioethics: a systematic review

• Lisa Brünig 1 ,
• Hannes Kahrass 1 &
• Sabine Salloch 1  

BMC Medical Ethics volume  25 , Article number:  64 ( 2024 ) Cite this article

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Intersectionality is a concept that originated in Black feminist movements in the US-American context of the 1970s and 1980s, particularly in the work of feminist scholar and lawyer Kimberlé W. Crenshaw. Intersectional approaches aim to highlight the interconnectedness of gender and sexuality with other social categories, such as race, class, age, and ability to look at how individuals are discriminated against and privileged in institutions and societal power structures. Intersectionality is a “traveling concept”, which also made its way into bioethical research.

We conducted a systematic review to answer the question of where and how the concept of intersectionality is applied in bioethical research. The PubMed and Web of Science databases were systematically searched and 192 articles addressing bioethical topics and intersectionality were finally included.

The qualitative analysis resulted in a category system with five main categories: (1) application purpose and function, (2) social dimensions, (3) levels, (4) health-care disciplines and academic fields, and (5) challenges, limitations, and critique. The variety of academic fields and health-care disciplines working with the concept ranges from psychology, through gynaecology to palliative care and deaf studies. Important functions that the concept of intersectionality fulfils in bioethical research are making inequities visible, creating better health data collections and embracing self-reflection. Intersectionality is also a critical praxis and fits neatly into the overarching goal of bioethics to work toward social justice in health care. Intersectionality aims at making research results relevant for respective communities and patients, and informs the development of policies.

Conclusions

This systematic review is, to the best of our knowledge, the first one to provide a full overview of the reference to intersectionality in bioethical scholarship. It creates a basis for future research that applies intersectionality as a theoretical and methodical tool for analysing bioethical questions.

Peer Review reports

Intersectionality is a concept that originated in Black feminist movements in the US-American context of the 1970s and 80s, particularly in the work of feminist scholar and lawyer Kimberlé W. Crenshaw [ 26 ]. The historical origin goes back further to Patricia Hill Collins [ 55 ] and the Combahee River Collective [ 25 ], who criticised White mainstream feminists for making Black women invisible in their struggles. They highlighted the interconnectedness of sexuality and gender with other categories, such as race, class, age, and ability and wanted to be visible in their lived realities as Black queer women with the complex experiences of oppression [ 25 ]. Until the late 1990s, the discourse on intersectionality was dominated by the “Big Three” of gender, race, and class, which were analysed as a triple oppression of women. There were already increasing doubts about the additive quality of these categories from the late 1980s onwards, articulated especially by Crenshaw [ 26 , 27 ]. She highlighted that the reality of discrimination against Black women in the US is much more complex, and that it is defined by “intersecting oppression” [ 27 ]. In her works, she harshly criticises the missing and ineligible legal protection for Black women. In terms of the use of dimensions such as gender, race, and class, Crenshaw states that one should not take an “additive account”. This would imply an addition of single axes such as race, gender, and class - e.g. that a Black woman is discriminated against on the basis of her sex and race, and therefore experiences double discrimination compared to a white woman. Rather than that, one should look at complex overlays and interactions of different social dimensions, which vary according to social, historical, and geographical contexts and cannot be fully distinguished from one another. Different axes, such as gender or age, then form a matrix of domination [ 56 ] and lead to “specific forms of complex disadvantage” [ 5 ], called “complex social locations” [ 105 ].

Intersectionality aims to create an awareness regarding how groups of people and individuals are affected by their social position in different systems and structures of power, such as laws, policies, governments, religious institutions, and the media and their maintenance on various levels [ 114 ]. These power relations are not mutually exclusive, but instead build on each other and affect all aspects of the social world [ 57 ]. As Patricia Hill Collins and Sirma Bilge [ 57 ] frame it: “Intersectionality is a way of understanding and explaining complexity in the world, in people and in human experiences”. These experiences are shaped “by the interaction of social locations (e.g. ‘race’/ethnicity, indigeneity, gender, class, sexuality, geography, age, disability/ability, migration status, religion)”, through which “interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy are created” [ 52 ]. Hill Collins and Bilge recognise the unlimited ways in which intersectionality is used and develop the following six core ideas to grasp intersectionality: Social inequality, intersecting power relations, social context, relationality, social justice, and complexity [ 57 ]. According to Patricia Hill Collins [ 56 ] intersectionality is simultaneously (1) a field of study, (2) an analytical strategy, and (3) a critical praxis, which reflects its initial connection to activism and its “transformative potential” [ 14 ]. As a field of study (1) we examine the development, topics, boundaries, and debates concerning intersectionality [ 12 ]. Intersectionality as an analytical strategy (2) asks “how intersectional frameworks provide new angles of vision” for social inequality [ 56 ]. Intersectionality as a critical praxis implies looking at certain social actors and how they use intersectionality to promote social justice. In the context of health care, Bowleg [ 14 ] defines intersectionality praxis as “the practical application of intersectionality to facilitate equitable health policy and practice for intersectionally marginalized groups”.

Originating in feminist and antiracist scholarship, intersectionality is often described as a “traveling” concept or theory [ 22 ], which has changed over time and is currently applied in different disciplines and manifold ways. Various scholars and disciplines have taken up key ideas of intersectionality, leading to a wide scope of approaches considering various axes of analysis [ 12 , 51 ]. Walgenbach [ 107 ] highlights that the paradigm of intersectionality is work in progress, which aims to open up new research perspectives while always focusing on the analysis of power structures and the aim of making social change. The term “intersectionality” has been widely taken up by scholars, policy advocates, practitioners, activists, and grassroots organisers to inform their research, work, or campaigning [ 52 ].

Looking more specifically at health, health care, and medical research, Olena Hankivsky [ 51 ] highlights that intersectionality can be used to recognise the specific lived experiences of people, and thereby “aims to improve our understanding of the complexity of social processes and oppressive vectors affecting illness experiences” [ 23 ]. The examples above already shed light on how intersectionality is increasingly being applied and used in various fields of health (care) research from health equity research [ 69 ] through public health [ 14 ] to (counselling) psychology [ 48 ] and quantitative psychological research [ 38 ]. Dhamoon and Hankivsky [ 33 ] argue that the use of intersectionality in health research makes “a concrete difference to the understanding and interrogation of a variety of health issues” such as mental health, violence against women, and HIV/AIDS, as well as the access to and quality of health-care services. It is argued, that intersectionality has the potential to add to biomedical approaches to health, existing tools of analysis, such as gender-based research, and social determinants in health-care research [ 33 ]. Furthermore, intersectionality can be used to not only look at the experiences of multiply marginalised groups and identities, but also understand the interlocking social structures and power relations reproducing social inequalities in health [ 79 ].

Bioethics constitutes an interdisciplinary research field addressing ethical issues in clinical practice, biomedical research, and public health [ 30 ]. Scholars of bioethics address questions of social justice, discrimination, and other ethically debatable practices in manifold ways. Academic contributions to bioethics are published in academic journals and books dedicated to the field, as well as in publications of specific clinical and public health fields, social sciences, or health systems research. Academic debates may be more likely to take place in specific disciplinary proceedings, and ethical contributions in specific areas of application in other journals may increase the visibility of bioethics and support ethical practice. In addition, there are mainstream approaches, such as principlism, and alternative approaches, such as feminist ethics and care ethics, widely used in fields such as nursing – with our open approach we aim to include all of them with respect to their relation to intersectionality.

Various scholars criticize that bioethics do not sufficiently address issues of social justice, including intersectional perspectives [ 32 , 42 , 86 ]. This criticism comes e.g. from feminist perspectives arguing that conceptions of justice need to address “real-life contemporary forms of structural injustice” and look at how forms of oppression and domination are also sometimes exacerbated by health policies and practices in healthcare [ 42 ]. De Proost [ 32 ] adds to such feminist perspectives with her critique of principlism as focusing on individuals instead of power relations and social justice, arguing that an intersectional approach could inform theorizing. Further criticism comes from Black Bioethics, which could “help reshape how bioethicists apply basic principles like justice” to consider Black peoples lived realities in a complex, intersectional way [ 86 ].

The use of intersectionality as a theoretical and methodological background and new research perspective has not yet been considered in a systematic way in bioethical research. However, narrative, scoping, or systematic reviews of intersectionality can be found in other disciplines and might offer inspiration for the use of intersectional perspectives in bioethical research. Siira et al. [ 96 ], for example, did a systematic review on intersectionality in nursing research and highlight that there is a need for “robust and clear framing of how the concept of intersectionality is defined” - this might also be true for intersectionality in bioethics. Some other reviews focus on concrete methods and methodology, such as intersectionality in quantitative research [ 11 ], or highlight a concrete approach such as community-based participatory research as a well-suited method for intersectional perspectives [ 58 ]. Moreover, different reviews highlight that intersectionality should be incorporated in the whole research process, from conceptualization and development of research questions, researched population/sample, to analysis, and to the way results are reported [ 29 , 74 , 102 ].

As one of the first attempts of considering intersectionality for bioethics discourse and practice, Wilson et al. show in their influential article on intersectionality in clinical medicine how an intersectional framework can be applied in the clinical context, looking at patient-physician interactions while considering how power shapes “institutions and clinical priorities” [ 113 ]. Barned et al. [ 9 ] focus on practical and ethical implications of intersectionality on the institutional level and on structures to see how such institutions might perpetuate social inequities. They argue that it is important to reflect “on the complexity of health care systems and their embeddedness in broader social contexts” [ 9 ]. Concerning the ways of applying intersectionality in bioethics, Barned et al. highlight the need to consider “bioethicists’ own positionality and underlying epistemic assumptions about the place of political engagement in ethical reflection and the processes and practices that need to change to support theoretical commitments to overcome bias and promote justice” [ 9 ].

Although intersectionality has occasionally been referred to in bioethics e.g. in the context of mental health care or certain social determinants of health such as migration background [ 72 ], a systematic overview of its function and use in ethical debates around health and health care is still missing. This systematic review (SR) is, to the best of our knowledge, the first to provide such an overview of the reference to intersectionality in bioethical scholarship. The timeliness and relevance of this overview is further underlined by current (bio)ethical debates e.g. on the treatment of trans people in health care systems [ 91 ], on gender and race inequities in the realm of digital health [ 40 ], forced sterilizations e.g. of Romani women [ 3 ], or questions around surrogacy [ 43 , 63 ]. Additionally, within the Covid-19 pandemic many health care disparities have been unveiled and inadequacies of current bioethical research have become visible in discussions around social justice [ 83 , 100 ]. For example, it was clear that sex and gender have an impact on SARS-CoV-2 infections and mortality [ 15 ]. However, these factors, as well as race and class, have not been consistently included in research on SARS-CoV-2 [ 15 , 53 ].

This review aims to serve as an inspiration and provides examples for where and how researchers may use the concept. Moreover, it enables bioethics researchers to develop a reflexive attitude toward their own work. The central objectives of this SR are to provide an overview of where and how the concept of intersectionality is applied in bioethics literature and to identify strands of these debates where intersectionality is mentioned and how it is defined. Accordingly, the SR creates a basis for future research that applies intersectionality as a theoretical and methodical tool for analysing bioethical questions. It may help future researchers to see where and how the concept of intersectionality has already been used, and what they could use it for in their own research in the field of bioethics.

Systematic reviews are a well-established method for synthesizing health sciences-related information in a systematic, transparent, and reproducible manner [ 60 ]. The aim is to ensure the comprehensiveness of the information given, reduce biases, and inform health-care decisions and policies [ 21 ]. The SR methodology was adopted and further developed to account for the peculiarities of bioethical research, which is characterised by a close connection between normative and empirical research questions. Different types of SRs in bioethics can be distinguished, such as those of ethical conclusions, arguments, issues, concepts, values/norms/principles, or recommendations [ 76 ]. Even if SRs constitute a rather new methodological trend in bioethics [ 77 ], some publications underline the need, for example, for SRs of reasons and their benefits and methodological value for bioethics to inform decision-making [ 98 ].

This review aims to serve as an inspiration for where and how bioethicists can use the concept of “intersectionality”, by providing concrete examples from existing publications. This project encompasses empirical, non-empirical (as not essentially data-generating), and normative literature (aiming for moral evaluation or value judgment). The aim is to provide a broad overview of a still rapidly developing and new field of research where intersectionality is used to address health-related (bio)-ethical questions. The PRISMA-Ethics (‘Preferred Reporting Items for Systematic Reviews and Meta-Analyses’) guidelines [ 60 ] were followed to ensure the full reporting of all relevant aspects. A study protocol was registered with the Open Science Framework ( https://osf.io/uw4xm/ ) prior to conducting the SR.

Search strategy and eligibility criteria

We used the PubMed and Web of Science databases to identify relevant publications. We chose PubMed as a widespread database in the health and medical sector and Web of Science to include interdisciplinary research results on intersectionality in health-related research on ethical questions, including the social sciences.

To develop the search terms, two thematic clusters were derived from the research question: (1) intersectionality and (2) bioethics . We tested different combinations of search terms out of the clusters in the two databases. To exclude non-relevant hits, health care context was manually applied as an eligibility criterion. This includes health care research as well as public health practice. Thus, topics such as climate change and gender or feminist literature were excluded.

First, the PubMed search term was developed. Second, the search term for Web of Science was derived from the initial search term, both using the Boolean operators “AND” and “OR” to connect the terms. The final search terms are displayed in Fig.  1 . The database search took place in March 2021 and we updated it in October 2022 because we suspected an increase in relevant publications. Therefore, the time period considered in this review was limited from 1989 (when Crenshaw first coined the term intersectionality) until October 2022. The articles underwent an examination according to predefined inclusion and exclusion criteria in a two-stage screening process: title-abstract and full-text screening. To remove duplicates and support the screening process we used the software EndNote.

Flow-chart illustrating the in- and exclusion of articles

The following inclusion and exclusion criteria were applied:

Inclusion criteria:

terms “ethics” or “bioethics” or reference to ethical questions.

explicit reference to the concept of “intersectionality”.

health care-related articles.

language: English or German.

articles in international, peer-reviewed journals.

Exclusion criterion:

study protocols.

In this review the term “bioethics” refers to clinical, research, and public health ethics and related fields. Regarding the inclusion of publications in the review, it was decisive whether the authors labelled their research and publication as a contribution to the ethical debate. The (methodological) quality of the articles screened did not serve as a criterion because of missing standards for quality appraisal in SRs in bioethics [ 75 ]. We did not conduct a reference check due to the manageability of the scope of data.

Article selection and screening

The first two authors screened all titles and abstracts in the initial databank search independently and applied a staged approach to discuss and consent to every 20–30 articles. The first author (L.B.) conducted the full-text screening and more than 10% ( n  = 15–30) of the articles were randomly cross-checked by the second author (H.K.). Any disagreement about whether a full text should be included in the review was resolved by consensus. Difficult cases were discussed further with the third author (S.S.). A total of 124 articles were included through the initial search in accordance with the eligibility criteria mentioned earlier (see Fig.  1 ).

We updated the search in October 2022 - also see Fig.  1 . The first two authors conducted the title-abstract screening of this update and all the authors screened the full-texts. Finally, another 68 articles were included in the updated search, leading to the final inclusion of a total of 192 articles (see Supplement 2 ) in this review (see Fig.  1 ).

All authors are White, cis, and able-bodied, and work in the Institute for Ethics, History and Philosophy of Medicine at Hannover Medical School. Lisa Brünig has an academic background in political sciences and diversity research, Hannes Kahrass is a physiotherapist and has an academic background in Public Health. Sabine Salloch is a full professor of medical ethics with academic backgrounds in medicine and philosophy.

Qualitative analysis and system of categories

Each article was analysed in full text according to the principles of qualitative content analysis (QCA) in reference to Kuckartz [ 66 ]. Passages were coded that included information about how and where intersectionality as a concept was used and/or mentioned. We assigned each quote to one or more codes. We used the software MAXQDA (2020) to support the coding, as it makes the structuring and analysis of textual documents clearer and more transparent, and helps to manage large quantities of qualitative data. The QCA is an interpretative evaluation method for processing qualitative data [ 67 ]. An important principle is that the analysis starts from everyday processes of understanding and interpreting linguistic material, and its rules are based on psychological and linguistic theory of everyday text comprehension. What is relevant here in terms of research pragmatics is that this method can be applied to larger amounts of text. Kuckartz [ 67 ] highlights that whichever variant of QCA is used, the focus is always on working with categories as tools for analysis and developing a category system (also called: a coding frame). The individual categories represent aspects of analysis that are extracted from the material and arranged non-hierarchically, but instead complement each other and address the key aspects to answer the two-sided research question [ 66 ]. Concerning the development of categories, Kuckartz [ 67 ] describes three main procedures: (1) concept-driven (deductive), (2) data-driven (inductive), and (3) a mix of deductive and inductive development of codes. We used a mixed deductive/inductive approach in the coding procedure in this review.

The analysis followed the general workflow of a QCA, which operates on a circular basis with categories and subcategories and the coding of data taking place in several cycles [ 66 ]. Kuckartz [ 67 ] generally describes five phases of QCA: (1) reading the data intensively, (2) building the coding frame, (3) coding the data, (4) analysing the coded data, and (5) presenting the results. In the present review, at first, categories were developed in a deductive/concept-driven way as a coding frame and assigned to individual text passages [ 66 ]. Table  1 shows the list of all deductive categories. The “three level” categories are based on Hankivsky’s work [ 52 ], as she highlights that intersectionality can be used to understand processes on and between different societal levels, including a micro, meso, and macro level. The category “referencing of the concept” is based on research showing that the concept of intersectionality has been increasingly picked up by more and more disciplines with the risk of obscuring the origin of the term in Crenshaw’s work [ 22 ]. The category “mention or definition” is based on the criticism that intersectionality is often only used as a “buzzword” [ 31 ]. The categories patient-physician interaction, access to health care, research, and education are inspired by the work of Wilson et al. [ 113 ], who discuss in which ways intersectionality can be valuable in the clinical context, focusing on patient-physician relations. Some of the deductive categories such as the application purposes as well as the medical disciplines and the different actors it could be applied to are related to the main research questions of this systematic review.

During the coding process, these deductive (concept-driven) categories were inductively (data-driven) supplemented by further subcategories (see Supplement 1 ) while some of the deductive categories in Table 1 were deleted because they seemed less relevant during the coding process. The category building was performed concurrently with coding and structured along the two central aspects within the research question, namely the questions of “where” and “how” intersectionality is applied within bioethical research. Regular team discussions took place on the assignment of the codes, the further development of the code list, and the system of categories derived. All three authors discussed and agreed on the assignment of codes to certain unclear text passages in regular meetings. Therefore, we developed the whole system of categories cooperatively.

The data analysis ultimately resulted in a system of categories, which represents the central instrument of the analysis and serves to systematize the content relevant to the research question. We completed the deductively created categories inductively in the coding process and then compressed, rearranged, and finalized the category system. In the following step, we selected five main categories for further analysis (see Supplement 1 ): (1) application purpose and function; (2) social dimensions; (3) levels; (4) health-care disciplines and academic fields; (5) challenges, limitations and critique. Only these five main categories were coded in the articles identified through the updated search. Due to the richness of the qualitative data, only the results derived from these five categories are reported in the following.

More than half (52%; n  = 100) of the 192 articles included are theoretical and 48% ( n  = 92) are empirical papers. Of the empirical studies, 95% ( n  = 87) followed qualitative approaches, 3% ( n  = 3) followed quantitative approaches, and 2% ( n  = 2) followed mixed-methods. When looking at the number of articles per year included, there has been a slow increase in publications over the years from one in 1997, to eight in 2016 and to 14 in 2018 (see Fig.  2 ). What follows is a greater increase with approximately 80% ( n  = 154) of the articles in this review published in the four years from 2019 to 2022. This mirrors the expectation that the term and concept of intersectionality has been increasingly taken up in bioethical research since 2019 – with the trend rising. Additionally, the articles included cover a broad geographical scope. While most of the research is based in a US-American and Canadian context, some of the studies are from African countries, such as South Africa, and from European countries, such as Poland. Figure  3 illustrates all countries covered in this review based on the contexts the respective authors mention in their articles. These contexts do not always match the affiliation of the lead authors but we found it important to show the contexts the results refer to. In 41 articles, the results broadly refer to a global context.

Number of included articles per year

Geographical scope of articles (context of the analyses)

“Where” the concept of intersectionality is used

The first part of the research question asks where the concept of intersectionality is applied in research on bioethical questions. Two main categories were built to analyse this distribution: the various health-care disciplines and academic fields in which the authors of the selected articles locate their research were quantified, and the three levels (micro, meso, and macro) and their relevance for an intersectional perspective were distinguished.

Health-care disciplines and academic fields

As a result, intersectionality is used for ethical issues occurring in a broad variety of health-care disciplines and academic fields throughout the articles included in this review (see Table  2 ).

The disciplines and fields captured in the system of categories are material-based and refer to the terms and descriptions that authors use themselves to classify their research. Therefore, the disciplines and fields are based on categorisations in the abstracts and full texts. A total of 26 categories arose: 8 health-care disciplines and 18 academic fields. The health-care disciplines include highly institutionalized health-care disciplines, such as psychology (943 in 38,5% of the articles), gynaecology (307 in 14,1% of the articles), gerontology (23 in 3,1% of the articles), and paediatrics (6 in 1,6% of the articles) (see Table  2 ). On the other hand, other academic fields not directly linked to health care are included, such as disability studies (45 in 7,8% of the articles), philosophy (12 in 1,6% of the articles), gender studies (5 in 2,6% of the articles), and deaf studies (2 in 0,5% of the articles). These fields appear because researchers locate their own research within these fields or reference to gender studies and gender theories as beneficial, for example, for public health [ 84 ] and for answering bioethical questions. In addition, the system of categories includes the identification of articles focused on a specific research field, such as HIV/AIDS, COVID-related studies, or research on trans people and their health (care). The articles included also explicitly located themselves in the context of de- or postcolonial studies (36 in 4,2% of the articles). As visualised in Table  2 , mental health/psychology, medical/bioethics, and nursing and nursing research are the fields that were coded the most within this review. Therefore, concerning bioethical questions, these seem to be the (research) areas where the term “intersectionality” has been most frequently used until now. This scope of fields and disciplines is also mirrored in the top 10 journals, included in this systematic review. Table  3 illustrates the journals most articles were published in as well as the number of articles from these journals that have been included in this review.

The two following examples will further clarify the use of intersectionality in different disciplines and fields: In regard to intersectional perspectives concerning ethical questions in gynaecology and reproductive/sexual health, certain topics occur as those most frequently addressed, such as assisted reproduction and surrogacy, lactation care, obstetric care and violence, birthing, abortion, contraception, and sterilization (see Supplement 1 ). Most of the studies included from this field are qualitative studies (63 %; n  = 33); the rest are theoretical papers. Interestingly, many of these articles work with the concept of reproductive justice, which is an “increasingly popular framework for understanding broad-ranging inequities relating to reproduction” originally coined by the SisterSong Women of Color Reproductive Justice Collective in the USA [ 74 ]. Therefore, the concept is based on an activist movement that follows an intersectional perspective focusing on questions such as disparities in abortion rates and the influence of “interactive effects of race and class” [ 85 ]. The concept of reproductive justice thus exhibits a kind of “intersectional extension” when incorporating reproductive rights and health, including aspects of (unintended) pregnancy, contraception, abortion, birth, family formation, and parenting in safe and healthy environments. Price argues that “a singular focus on abortion rights neglects how race, ethnicity, class, sexuality and other markers of difference are implicated in reproductive rights for many women” [ 85 ].

As a second example, it is interesting that mental health and psychology play a dominant role in the sample of publications analysed. The subcategories demonstrate (see Supplement 1 ) that the focus of the articles using intersectionality included is on certain health conditions, such as trauma and post-traumatic stress disorder, autism, schizophrenia, and addiction. On the other hand, the system of categories displays certain areas, such as mental health nursing, education and training in psychology, as well as the often-coded area of psychotherapy and counselling psychology. An elaborated argument for incorporating intersectionality into mental health issues can be found in the work of Rosenthal [ 90 ]. She argues that

there are large bodies of existing evidence about the adverse effects of both interpersonal and structural oppression, inequality, and stigma across the spectrum of human experience and behavior […], suggesting these issues fall squarely within the realm of psychology across subfields, populations, and specific phenomena of interest for psychologists [ 90 ].

A closer look at the subcategory of psychotherapy and counselling psychology shows that marriage and family therapy and creative arts therapies are especially dominant topics in research from an intersectional viewpoint (see Supplement 1 ). Some authors, for example, focus on the benefit of intersectional perspectives in creative arts therapy to reconsider its foundation “to open a conversation about intersectionality and the ethics of care” [ 101 ]. Van den Berg and Allen voice concern about the “overwhelming Whiteness of art therapy” [ 103 ] while Wright and Wright [ 117 ] qualitatively analyse the experiences girls and young women living with violence-based trauma have in art therapy in the United Kingdom.

Insight into the discipline of paediatrics shows that different topics are discussed here in relation to intersectionality. Bannink Mbazzi and Kawesa [ 8 ], for example, underline the importance of the intersectionality of family-centred care, poverty, and neo-colonialism when working with children with neurodevelopmental disabilities in the Global South and aiming for improvements in the provision of health care. Another topic occurring in this field is the consideration of family immigration status as an intersectional social determinant of health interacting with other determinants such as race, religion and language [ 72 ].

To give one last example for this category, the article by Sikka [ 97 ] in research concerning palliative care casts a feminist perspective on the topic of medically assisted dying and the ways in which (structural) barriers influence access to it for marginalised groups. Another article from the German context [ 79 ] shows how an intersectional perspective on end-of-life care policy discourses reveals that a critical theoretically grounded notion of difference needs to be incorporated into relevant ethical principles of end-of-life care.

As visualised in Fig.  2 , this category is concept-driven and based on the definition of the concept of intersectionality, which includes the tenet of multilevel analysis across questions of identity, representation, and structure [ 33 , 115 ]. As Hankivsky points out:

Intersectionality is concerned with understanding the effects between and across various level in society, including macro (global and national-level institutions and policies), meso or intermediate (provincial and regional-level institutions and policies), and micro levels (community-level, grassroots institutions and policies as well as the individual or ‘self’) [ 52 ].

The most prevalent level in the research included is the individual level, followed by the structural level, as reported in Supplement 1 . However, the institutional level is mentioned in fewer articles and therefore, garners less attention in bioethical research, as shown in this review.

The micro level focuses mostly on individual experiences. Many arguments on this level include aspects related to “identity”, meaning the intersectionality of multiple identities or identity categories such as gender and race, which shape individual lived experiences and create unique forms of oppression [ 110 ]. These categories themselves are defined as “social constructions”, often binary, while intersectionality “allows for the view of each identity as being on a continuum that is fluid, constantly shifting and adapting to social contexts” [ 80 ]. On the micro level, a focus is on the needs and barriers that individual people or communities face in regard to access to health care, for example, related to “multiple axes of identity that influence personal HIV risk” [ 78 ]. Other examples are analyses of the role and responsibility of the individual physician to improve, for example, the health of trans people [ 114 ]. Questions are addressed such as how an individual is socially located within society or within the hospital itself. This “location of self” is also referred to in relation to researchers and therapists and their need to self-reflect to follow an intersectional practice. Watts-Jones, for example, analyses how the transparent reflection of her own privileges and discriminations in society compared to those of her patients in therapy influence the therapeutic relationship – she calls this “opening the door to dialogue on intersectionality in the therapy process” [ 108 ]. Rogers and Kelly [ 88 ] criticise how the intersection of different social groupings at the level of the individual are rarely considered or addressed in health research. They argue that people instead are being ranked according to only one aspect, for example disabled people are considered more vulnerable than people from ethnic minorities.

Individuals on the micro level can be seen as a starting point of looking at their positioning in institutions and power structures. Therefore, the meso level in this review focuses on power structures in health-care institutions, such as hospitals and care facilities, as well as within academia and education. One example is the profession of nursing, where van Herk et al. [ 104 ] also apply an intersectional lens to nursing education and research. The authors argue that an intersectional paradigm paying attention to unequal power relations would be helpful in “nursing organizations and the institutional settings in which nurses work” to act out “our ideals of social justice in a practical and meaningful way” [ 103 ]. Weitzel et al. [ 109 ] also argue that nurses could act as allies against racism in the respective institutions. Another example on the meso level is the focus on certain health-care sectors, such as the Swiss health-care sector with its increasing specialisation of physicians and interprofessional collaboration [ 4 ]. Further main topics are the economisation within the health-care sector and neoliberal market logics [ 10 ], the depersonalization of health care [ 44 ], and feminisation of the medical profession [ 4 ]. Authors such as Barned et al. [ 9 ] highlight the role of institutions in perpetuating social inequities. Asakura and Maurer [ 6 ] call for challenging institutional practices that perpetuate the marginalisation of certain clients or patients. To give a more concrete example, Muntaner and Augustinavicius [ 82 ] discuss hiring practices in health-care institutions and argue that, first, doctors from the class, gender, and race of the communities they serve need to be recruited before good clinical practice can be implemented.

On the macro level, we find the evaluation of certain health-care policies, laws, legislation, and the resulting inequities. Examples for these are anti-ableist policy recommendations by Fine [ 41 ] or analyses of forced sterilization policies by Albert and Szilvasi [ 3 ]. Furthermore, the role of health authorities, such as the American Psychological Association, and international health organisations, such as the World Health Organization, and their actions in the context of discrimination through policies are analysed [ 16 ]. Overall, the focus of the macro level is on power structures as an essential characteristic of intersectional approaches. Williams [ 112 ], for example, looks at how intersecting systems of privilege and oppression, such as global capitalism, neoliberalism, patriarchy, imperialism, and postcolonialism shape the transnational political economy of care with certain practices of care labour. When using an intersectional framework, researchers must consider structural discrimination and its effects, for example, on the health of lesbian, gay, bisexual, trans, queer, inter-, and asexual (LGBTQIA+) people [ 49 ]. Therefore, the “fundamental causes” of social inequalities in health are taken into consideration, such as poverty and social discrimination [ 13 , 71 ]. The last aspect mentioned on the macro level concerns historical forms of discrimination, such as White supremacy [ 46 ]. It is deemed relevant to consider the effects of being a member of a marginalised community, which has experienced enslavement, attempted genocide, mass incarcerations, and neocolonialism in the sense of racial trauma in regard to trauma recovery [ 17 ].

Many authors highlight that these three different levels cannot be separated when using an intersectional perspective. One example is the article by Macleod on the concept of reproductive justice, where the three levels are described as inseparable and “as the intertwining of individual and social processes” [ 17 ]. Returning to the study by van Herk et al. on nursing, the following quote exemplifies how intersectionality as interlocking systems of oppression highlights the linkage of individual, institutional, and structural levels:

Often in the current healthcare environment of efficiency, with the limited time and resources within which many nurses work, it feels like there is little time to really understand our patients. However, we need to question a system that puts more emphasis on money and efficiency than giving us the time, education, and resources we need as nurses to be able to provide the type of care that not only have we been trained to do and which our profession requires of us, but which as dedicated and compassionate human beings we want to be able to provide [ 104 ].

“How” the concept of intersectionality is used

The second part of the main research question asks how the concept of intersectionality is used in bioethical debates. On this second axis, three main categories were developed to answer this question, including (1) the different social categories or dimensions, (2) the functions and application purposes of the concept of intersectionality, and (3) the challenges, such as implementing the concept in clinical settings, limitations, and critique of the concept.

Social categories/dimensions

A total of 22 different social categories emerged during category development (see Supplement 1 ), including age, body, language, migration status, family status, education, professional status, and caste. Different terms are being used for the issues considered in intersectionality, such as “categories”, “dimensions”, or “aspects of identity” [ 36 ], while others talk about the “intersection of social stratifiers” [ 7 ]. Figure  4 visualises the 15 most frequently coded social categories, including subcategories. Overall, the category system contains 48 categories, including 22 main and 26 subcategories.

Social categories/dimensions of intersectionality (number of articles)

As expected, the established triad of race, class, and sex/gender [ 64 ] was most frequently used in the articles included, and can be further stratified into subcategories. The category sex and gender (identity) includes terms for systemic forms of oppression, i.e., (cis-)sexism, misogyny, and patriarchy. The most frequently quoted subcategory is trans/transphobia/cissexism, analysed e.g. in the context of health literacy for LGBT migrants [ 106 ] or when it comes to healthcare mistreatment of transgender and gender diverse individuals of colour in the United States [ 91 ]. However, aspects concerning intersex people have only been mentioned in two articles (see Supplement 1 ) in St. John’s article on infant mental health, which shows that intersex infants as well as “gender fluid and nonconforming toddlers are almost entirely repressed in infant mental health discourse” [ 99 ].

Sexuality/sexual orientation, disability, culture, and age are the most frequently used categories after race, class, and gender (see Supplement 1 ). In addition, Fig.  5 shows the ways in which the different social categories/dimensions overlap in the analysed articles. This is the so-called “Code Relations Model”. It is created by the software MAXQDA and visualises the simultaneous occurrence of codes in a text segment. The thick lines show the strongest overlap of codes; in this case, it visualises the triad of race, class, and gender. Burger et al. [ 18 ] address this triad when analysing public health nursing actions for Black women in the United States, forms of structural violence and ways in which reproductive justice as an intersectional concept can advance health promotion for Black families.

Figure  5 further shows that the dimension of sexuality/sexual orientation often occurs together with class, gender, and race. An interesting example is the study by Burrow et al. [ 19 ] on the experiences of queer birthing women in rural Nova Scotia and the influence of heteronormative and homophobic healthcare practices and policies. The analysis focuses on the intersection of queerness and rurality, however more intersections are mentioned, and the sample includes a wide age span, people from working class to upper class as well as White, First Nations, and African-Nova Scotian persons. Another encompassing example is the study by Dubé et al. [ 35 ] on trans people, cis women, as well as racial and ethnic minority groups, who are all underrepresented in HIV cure-related research and should be considered.

Code relations model

Issues related to ableism are addressed in articles intersecting with gender, race, and class, but also age and culture. A good example is a review of research ethics literature by Cascio et al. [ 20 ], considering how in the case of autism research ethics, sex and gender, race, geography, language, socioeconomic status, age, and level of support needs are considered. The authors highlight that the exclusion of marginalized subgroups such as people with autism “is a major ethical concern” [ 20 ]. Another important dimension visualised in Fig.  5 is culture. One example for looking at the intersections of culture, race, and gender is the article by Eagle and Long [ 36 ] on psychotherapy in contemporary South Africa and the role, these dimensions play in the relationship between therapist and client in a “post-Apartheid society” [ 36 ].

The articles on age in this review mostly discuss ageism together with heteronormativity and address health care needs of older LGBTQIA people [ 86 , 111 ]. The qualitative study by Cuesta and Rämgård [ 28 ] focuses on the intersection of gender and race in the context of power relations in elderly care homes.

On the contrary, professional status, social capital, and caste are the least mentioned categories in this review (see Supplement 1 ). Professional status mostly occurred in relation to immigration, education, and language, referring to e.g. rights of immigrants in the United States and the ways in which such discrimination increases the risk of illness and lack of access to health care due to financially precarious situations [ 61 ], or the situation of Cuban-educated doctors migrating to Florida [ 50 ]. The category “social capital” is mostly used in listings of social determinants of health e.g. in the context of Global Health epidemiology [ 2 ]. Sometimes it is described as social networks or safety nets which can contribute to health and well-being and are often missing for example for immigrant Latina women as described in the article by Kelly [ 61 ]. Caste is only mentioned in one article and analysed in relation to gender. Islam et al. [ 59 ] elaborate on the intersection between gender and caste when it comes to increased discrimination of female doctors in India.

Functions and application purposes

The main category “functions/application purposes” was created to grasp the core ideas of what intersectionality is used for in the respective research approaches. As visualised in Supplement 1 , intersectionality is used in the articles in order to understand and explain a phenomenon, make certain aspects visible, resolve a certain problem, foster interdisciplinary dialogue, and for better health data collection. An aspect that also strongly formed this category is the description of intersectionality with reference to Patricia Hill Collins [ 56 ] and Cho and colleagues [ 24 ] as a field of study, an analytic strategy, and a critical praxis.

In the articles included, intersectionality is most frequently described as a critical praxis. This incorporates the aspect of working towards justice, solidarity, and representation. Some researchers argue that the concept of intersectionality can be explicitly used to ensure that research results are relevant for respective communities, and thereby foster “a politically engaged bioethics” [ 47 ]. An example can be found in Henrickson’s [ 54 ] focus on research ethics with gender and sexually diverse persons. The article encourages researchers to use an intersectional perspective in the design and analysis of their data to be able to capture the complexity of participants’ experiences. This is exemplified by a study on the use of PrEP (pre-exposure prophylaxis) among Black men who have sex with men. An intersectional perspective means to “move beyond a biomedical approach to HIV prevention”, consider structural barriers to PrEP uptake such as finances, stigma, or experiences of racism with health care providers and thereby improve respective policies [ 54 ].

An intersectional perspective in research is suitable for making analyses deeper and more complex and considering historical contexts, for example, concerning therapy for people from indigenous families who suffer from intergenerational trauma [ 45 ]. Gerlach’s [ 45 ] analysis in the Canadian context entails a critical reflection of the relevance of neo-colonial practices in therapy with indigenous people to improve their health care experiences, as well as a reflection of own privileges as a white, educated, middle-class therapist. Another aspect of intersectionality as a critical praxis is its potential to inform the development of health-care policies and interventions, such as for meeting mental health needs and the care of trans people [ 92 ]. Shelton and Lester [ 92 ] specifically analyse the ways in which Black trans women are affected by transphobia, classism, and racism in different regions of the US when it comes to mental health care. Writing from the angle of critical disability studies, Fine [ 41 ] demands that when psychologists translate research into policy “we need to center analyses in the lives and experiences of people with disabilities” and consider racism, sexism, and homophobia in the process.

In addition, intersectionality is often described as a tool for critique and researchers’ (self-)reflection. Shimmin et al. [ 94 ] develop suggestions and questions for discursive reflection practice for research teams when public partners are involved in their research, using trauma-informed intersectional analysis. They encourage researchers to reflect on their own values, experiences, beliefs, and political commitments in the areas of health that they will be researching.

Another function of the concept that came up in the coding process is the use of intersectionality for theorising the relationship between research and activism. In the context of sexual and reproductive health, Price argues, “as researchers, we can learn from reproductive justice activists” [ 85 ]. Regarding the field of psychology, Moradi and Grzanka point out that “counseling psychologists can contribute to translating insights of academic scholarship into activism and social transformation with and on behalf of participants, clients and students” [ 81 ]. In their work, these two authors also follow the mentioned definition of intersectionality as a field of study, an analytical strategy, and a critical praxis. Alongside these three aspects, they develop guidelines on “how to use intersectionality responsibly” [ 81 ]. They call these guidelines a “call to action” [ 81 ] not only for researchers, clinicians, and activists but also for reviewers, editors, and supervisors. Similarly, Rosenthal [ 90 ] makes concrete suggestions for individual psychologists on how to apply intersectionality in their research, teaching, and practice, as well as for psychology as a field. She suggests (1) engaging and collaborating with communities in the research process, (2) addressing and criticising societal structures, (3) building coalitions with communities in research, teaching, and clinical work, (4) attending to resistance in addition to resilience, and (5) teaching social justice curricula.

One last exemplary function of intersectionality that is potentially important for future debates in bioethics is the understanding of intersectionality as a form of ethics itself. Grzanka and colleagues suggest that “because of its focus on social action and social justice intersectionality can be thought of as a form of ethics itself and ought to be taught alongside key bioethical principles such as principalism [sic], utilitarianism, and virtue ethics” [ 47 ]. This suggestion opens up new debates about the standing and importance of intersectionality in bioethics. Critical voices, however, argue that “the common neutralization of political and epistemic commitments in bioethics […] complicates the integration of intersectionality in traditional bioethics” [ 9 ].

Challenges, limitations and critique

The last main category answering the question of how intersectionality is used in bioethical research concerns challenges and limitations, for example in the implementation and critique of the concept of intersectionality.

One of the most frequently voiced challenges concerns the practical implementation of intersectionality in clinical settings and the everyday work of health-care providers. On the one hand, it is explicitly acknowledged that intersectionality does not offer a “how-to” manual for clinical medicine or a blueprint for ethical action [ 9 ]. On the other hand, there is a demand for further discussion on the conditions of its application. Grzanka and Brian highlight that “clinical encounters do not occur in a vacuum” [ 46 ], and institutional aspects need to be considered [ 112 ]. Lanphier and Anani [ 68 ] additionally argue that intersectionality might create the risk within the clinical encounter for clinicians to impose and reproduce biases towards patients. The danger of labelling and putting people into particular groups remains and makes patient narratives necessary [ 73 ]. At this point, it is important to view the concept of “bias” itself critically from an intersectional perspective. It can entail the risk of individualization of structural inequalities and of reduction to the personal level of individual attitudes [ 65 ]. With reference to Cho, Crenshaw, and McCall [ 24 ] structural intersectionality however highlights interlocking oppressions to claim social justice.

Another challenge concerning analysis is the often-posed focus on one main axis, such as racism or sexism, or on one homogenized group identity, which creates gaps in bioethics research [ 23 ]. Authors such as Aguayo-Romero [ 1 ] and Eilenberger et al. [ 37 ] demand that the complexity of analysis should be expanded to also include classism, heterosexism, and other systems of oppression, such as ableism, ageism, cissexism, colonialism, ethnocentrism, nationalism, and colourism. All in all, this broad challenge appears to be about finding a balance between the aim of intersectional analysis to put an emphasis on making power structures and institutionalized forms of oppression visible for more complexity, on the one hand, and the practicability of (especially quantitative) research, on the other hand.

Another fear in relation to the implementation of the concept is an overuse and mainstreaming of intersectionality [ 4 ] together with the danger of intersectionality being “coopted, depoliticized and diluted” [ 81 ] by focusing only on multiple identities and not addressing structural inequities [ 90 ]. Shin et al. [ 95 ] argue that the travelling of the concept causes a loss of its transformative potential. The fear is that its origin in an activist, anti-racist, and feminist setting, its contemporary advancements in feminist, gender, and women’s studies, and its focus on power structures could be forgotten.

A common critique is that intersectionality is a vague concept [ 13 ] with a lack of clear methodology [ 112 ] and is often used as a “buzzword” [ 31 ]. We also observed this phenomenon in our data, when certain studies e.g. used the term intersectionality in the title, but never defined or actually adapted it in the full text [ 3 ]. However, this ambiguity is also seen as being inherent in the definition of intersectionality and sometimes negotiated as both a weakness and a strength of the concept with opportunities for debate, theorising and research at the same time [ 13 , 31 ]. Authors such as Muntaner and Augustinavicius [ 82 ] call for a clarification of the framework terminology of intersectionality, for example by using more concrete terms to describe social systems. This critique of methodological “murkiness” [ 13 ] can be especially problematic in cases of quantitative research because many statistical methods often rely on assumptions of unidimensionality. However, there are some best practices for quantitative projects for example in Price [ 85 ], including disaggregating samples by race and gender. Moradi and Grzanka [ 81 ] argue that intersectionality does not mandate qualitative methods, but it does mandate critical self-reflexivity also on methods and results, which is common in qualitative research. Researchers need to be aware of their own decision-making process and be able to state why they choose certain intersections, which categories they study, and how these categories align with individuals’ self-perception [ 45 , 61 ].

Critique concerning the implementation of intersectionality entails that the focus should be not only on marginalisation but also on privileges. Employing the framework just to study marginalised groups is argued to be problematic because privileged groups, such as White, male, able-bodied people remain uninterrogated, which again reinforces their normativity [ 95 ].

In the following, we will discuss three aspects emerging from the review findings concerning future research in the field of bioethics and highlight some limitations of this review. When looking at the different academic fields and disciplines identified in the analysis, we notice that intersectionality is not used in all medical and health-care disciplines. Large clinical fields, such as trauma surgery or otolaryngology are completely missing in the review. To better understand this finding, a comparative look at the introduction of intersectionality as a research concept into the fields of gender studies versus bioethics could help. Intersectionality has played a central role in the emergence and development of the field of gender studies. This process also included a politicisation of research and an overlap between scholarship and social activism. Intersectionality significantly transformed the research branch of women’s studies, which, in its beginnings, focused mainly on sex and gender. The introduction of intersectional approaches merged insights from different fields, such as postcolonial, disability, and gender studies. The prominent role of intersectionality in gender studies has interesting implications for its introduction into bioethics, such as the need for self-reflexivity, interdisciplinary cooperation, and the relevance of the interconnectedness between individuals, institutions, and societal power structures. However, there are “disciplinary divides” [ 62 ] between academic branches from which intersectionality originates, such as gender studies and bioethical and health research. With reference to Kelly et al. it could be argued that bioethics and health research in general “privileges certain types of knowledge” [ 62 ]: “Classifying lived experience and qualitative scholarship as lesser form of knowledge, or excluding them from the diagrams of what ‘counts’ as knowledge contradicts intersectionality” [ 62 ]. The origin in research from an intersectional perspective lies in lived experiences and includes an agenda for positive (social) change.

An interesting focus of discussion is the number, combination, and constellation of social categories used in the articles included. As we can see in Figs.  4 and 5 , the established triad of race, class, and gender is the focus of research concerning bioethical questions included in this review. However, in the social sciences and gender studies, especially in social inequality research, this triad is argued to be relevant for all modern, capitalist societies in differing specific ways according to the local context. When looking at the way intersectionality developed in social sciences and especially gender studies, we can see that an increasing number of social categories, such as ability, age, sexuality, and religion, have been included in intersectionality research over time. Crenshaw highlighted that: “While the primary intersections that I explore here are between race and gender, the concept can and should be expanded by factoring in issues such as class, sexual orientation and color” [ 27 ]. Richter and Kricheldorff [ 87 ] e.g. focus on the intersection of sexuality and age and argue that an intersectional perspective can contribute to needs-based care for LGBTQIA senior citizens. Engelman et al. [ 39 ] analyse the intersection of disability with gender, age, class (specifically homelessness), professional status, family, education, and race - demanding a disability justice framework for nursing education to improve the quality of care for persons with disabilities.

Moreover, while intersectionality “travels” over time and into different academic disciplines, the meaning of single categories themselves is often debated. The definition and understanding of the category of “race”, for example, differs according to geographical context and historical backgrounds, such as slavery and (neo-)colonial continuities, and is for example related to ethnic, cultural, and religious differences. In our review sexuality, (dis)ability, and age are the categories that are mentioned the most, after gender, race, and class. We therefore argue that these seem to be relevant dimensions in relation to bioethical questions. Examples are questions of autonomy in regard to people with disabilities and their access to certain kinds of health care, such as gynaecological services [ 116 ]. Another exemplary topic with a focus on age and sexuality is the question of what assumed heterosexual identity means for patients in geriatric care [ 110 ]. The unexpectedly high number of different social categories in this review, such as body and caste, illustrates the openness of the intersectional approach and the possibility of using it flexibly depending on the research interest and historical and geographical context. Some studies e.g. show the intersection of one’s body, with disability, gender, age, and migration [ 8 , 39 , 41 ].

The use of activist knowledge and insight as one of the functions of intersectionality is another important point for discussion. As exhibited in the analysis, the concept of intersectionality can foster politically engaged bioethics and is suited to theorise the relationship between academia and activism. This leads back to the aspect of different understandings of scientific knowledge production itself. An intersectional approach for bioethics researchers necessitates reflection on their own privileges and discriminations within academia and society as a whole. Grzanka and colleagues argue that

intersectionality reminds us that many of the answers to the question of how to do bioethical antiracism will come not from privileged academics, but from the actual individuals, organizations, and advocacy groups already fighting against racism, sexism, classism and other intersecting forms of health inequity in the United States and worldwide [ 47 ].

In this context, many authors highlight that intersectionality originates from Black, anti-racist movements and activism, and is, in itself, a “social justice movement” [ 81 ]. Therefore, with reference to Crenshaw, researchers should “work to enact resistance and activism as a central rather than ancillary part of research” [ 81 ]. To add to this, there is more recent research on the relationship between activist engagement, bioethics, and academia. While Rogers and Scully argue that “bioethics has an inescapable activist element because ethics itself is partisan, in the sense that is always entails a move toward the normative” [ 89 ], Draper voices scepticism and argues about “personal and professional risks, as well as rewards, to activism” [ 34 ]. Draper designs a taxonomy of impact or engagement activities for academic bioethics as a scale that ranges from little engagement beyond academia to activities defined as activism. An important remark is that it “is not enough to claim that one’s activism is ethically motivated without being explicit about the foundations of one’s motives”, might they be, for example, Catholic, libertarian, or feminist. Moreover, we need to consider the national and institutional contexts when estimating the options of being “agents of change” [ 34 ]. Lindemann, who also engages in feminist philosophy, highlights that bioethicists need to consider how “social pressures and personal idiosyncrasies affect moral judgments” [ 70 ] including one’s own biases and worldviews. She adds to this aspect the suggestion for bioethicists who do not engage in activism and activist bioethicists to cooperate and listen to each other.

With this review, we show more concrete ways for bioethicists to implement intersectionality in their research. As has already been mentioned, Moradi and Grzanka develop certain guidelines for “how to do intersectionality responsibly” [ 81 ] in the field of psychology. The authors intentionally use the term “guidelines”, borrowing from the American Psychological Association’s “guidelines for practice”, “to underscore that responsible stewardship of intersectionality requires active practice” [ 81 ]. The guidelines are organised alongside three major understandings of intersectionality, as has already been mentioned in the analysis: intersectionality (1) as a field of study (guidelines 1 and 2), (2) as an analytic strategy (guidelines 3–5), and (3) as a critical praxis for social justice (guidelines 6 and 7). The way they introduce these guidelines leaves room for adaptation and specification in bioethical research. One example could be guideline 2: “Make explicit the set of implicit values in knowledge production and critically evaluate how these values obscure intersectional analysis; expand the range of values and perspectives used to produce transformative knowledge and contribute to social change” [ 81 ]. Bioethicists could and should critically evaluate what kind of theories they use as standards in their work and research, where these theories originate from, in which contexts they are located, and which blind spots or implicit presumptions are included. The guideline demands “deep critical evaluation and re-envisioning of epistemology and to pursue interdisciplinary collaborations” [ 81 ].

Another interesting example is guideline 6: “Expand analytic approaches to intersectionality research and evaluate research for its level of community engagement and social impact throughout the research process, as opposed to only scholarly impact, generalizability, or statistical significance” [ 81 ]. Bioethicists could therefore ask themselves: Who is involved in the research process itself? Where are the research questions derived from and how can we have marginalised communities participate in the research? How do we define desired outcomes? In service for whom and why? These questions reflect the different functions of an intersectional perspective, can help to make bioethical research more participatory for marginalized groups to be heard, and ensure that research results benefit these communities. Thereby discrimination in the health-care sector can be analysed and stereotypes can be made visible and avoided in the future. An intersectional perspective therefore encourages bioethicists to learn from anti-racist, feminist, and queer critiques, enables them to jointly draw from these perspectives and address various power structures at the same time.

Finally, we mention some limitations of the study. One consideration worth mentioning is the meaning of the first author’s social location in society as a White, able-bodied cis-woman for the coding process and analysis. She recognised, for example, that the subcategory “Whiteness” was added comparably late to the system of categories, pointing towards her own blind spots and an impulse towards “othering” during the coding process. We argue that this form of self-reflection is part of an intersectional approach in qualitative research. The goal is not to appropriate the concept coming from Black feminism but to acknowledge its origin and stay self-critical during one’s own research processes.

Another aspect to reflect on is the fact that the articles included come from very different academic fields (bioethics and other journals). This might be a difficulty in terms of comparison but, at the same time, is a strength of this review. On the one hand, the articles include different areas and cultures of research and are written by authors from disciplines ranging from medicine and bioethics to sociology and gender studies, which might also be due to the interdisciplinarity of bioethical research itself. This means they use various methodological and theoretical approaches but also have differing understandings of scientific knowledge as such. On the other hand, the aim of this study, to give a first fruitful overview of the use of intersectionality for answering health-related (bio)-ethical questions was achieved. Moreover, the geographical scope of the research results included is very broad. While the majority of studies are based in a US-American and Canadian context, there are articles included from many other parts of the world, such as South Africa, Zimbabwe, Sri Lanka, and Brazil, as well as European countries, such as the UK, Switzerland, and Poland. An extension of the search to ethics monographs and textbooks would be possible. Subsequently, one could investigate thematic differences between journals and books. Our review has searched for ethics in dedicated ethics journals but also in journals from other fields, comprehensively covering the ethical literature in academic journals. An extension to books and book chapters was beyond the scope of this work. Lastly, because the use of the term “intersectional(ity)” was an inclusion criterion, it could be that research that is also intersectional in its analysis, for example, research on racism in bioethics which includes other dimensions, such as gender, could have been overlooked in this review.

This SR provides a full overview of where and how the concept of intersectionality is used in bioethical research. It points out the breadth of academic fields and health-care disciplines working with the concept, from psychology and nursing, through gynaecology to palliative care and deaf studies. The use of the concept implies the consideration of the individual micro level, the institutional meso level, and the macro level of societal power structures. We developed the category system to provide insight into the wide scope of studies where intersectionality had already made its way into bioethical research. We identified several important functions that the concept of intersectionality fulfils in bioethical research, such as making inequities visible, resolving problems, improving health data collection, criticising, and self-reflecting. Intersectionality is also a critical praxis and, in this regard, close to the main aspects of bioethics, such as the (activist) goal of working towards justice in health care. Intersectionality aims to make research results relevant for respective communities and patients, it informs the development of policies and interventions, and situates analyses within their respective historical context.

However, an intersectional perspective is also suited to make bioethics theory and research itself more relevant as it strengthens the aspect of social justice, encourages self-reflection, and analyses that are more complex. It therefore creates meaningful research results that comprehensively address the realities of research subjects and enrich bioethical scientific discourse. As Kelly points out regarding the integration of feminist intersectionality and bioethics: “The goals of social action and justice on the one hand and identification of proximate causes and treatment of health problems on the other are not necessarily mutually exclusive” [ 61 ]. More interdisciplinary collaboration and community-based participatory research is needed as an area of common ground for an integrated approach. This systematic review shows how an intersectional perspective is useful in debates of these current controversial bioethical issues as well as for health-care providers themselves for working towards social justice, equal access, and less discrimination.

This review could be a basis for future research on how intersectionality could and should be used to answer health-related (bio)-ethical questions. It is a starting point for strengthening feminist perspectives in bioethics and fostering politically engaged bioethics. Concerning the question of how far bioethicists can and should be activists, we would like to underline some suggested strategies “such as courageously implementing policies and confronting the powerful” [ 89 ]. However, there is a need to discuss this in more detail using case studies and the sharing of experiences. Implementing an intersectional perspective in bioethical research means fostering a politicisation of bioethics, a willingness for social change and transformation, and arguing for new, more participatory forms of research and reflection on the former methods and traditional theories used. This includes critical self-reflection on the part of members of the field of bioethical research itself, the ways in which it is constituted, as well as which and how questions are asked and who answers them. Therefore, intersectionality is well suited to give innovative impulses for the field of bioethical research and theory itself.

In terms of future research, examples of best practices could help in discussing the concrete further implementation of intersectionality in certain health-care disciplines. Inspired by an article by Shields [ 93 ] from the field of psychology, there are two main goals for the field of bioethics in relation to intersectionality. First, feminist bioethics, as well as anti-racist, decolonial, and queer bioethics should be fostered and researchers using these perspectives should be brought together, promoted, and funded. Second, the intersectionality perspective should be implemented and brought into mainstream bioethics. Following this path, we see opportunities for broadening the perspective and enhancing the theoretical depth and methodological quality of bioethical scholarship.

Data availability

The datasets used and analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome

Lesbian, Gay, Bisexual, Trans, Queer, Inter und Asexual

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

Qualitative Content Analysis

Systematic Review

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Reflection on Research Ethics

Research ethics is something I have been picking from my supervisor, I being an early researcher, however I have learnt so much from this course in a short period; besides it is timely because I am just working on my second paper for publication. I have heard about some ethical issues earlier, I just didn't know that some (falsification and fabrication) were specific terms in research ethics. I have been ethical with my research more out of a clear conscience than because of ethical reasons and I believe this applies to some researchers out there. I didn't even know that published papers could be retracted, I just thought that a paper once published is always there, and the worst that could happen is if it wasn't cited. This lesson has corrected my view on duplicate publications in light of conference proceedings, being made into journals; my first published paper was developed from a conference presentation, though with several modifications by all authors, which I now have full knowledge of how it can be done and I can defend it. Who would have known that a bursar on a selection committee for a bursary that a relative coincidentally applies for can be an issue? I have learnt newly the real purpose for declaring conflict of interest, as well as softwares that check plagiarism. Something unclear in this lesson is how to cite because I checked a link that distinguished word-for-word and paraphrased plagiarism; I intend to take the lessons later on, however this course didn't say much about this. The knowledge from these lessons already have tremendous impacts on me and my research, first I will not be blacklisted for plagiarism because I would have been doing something of the sort in the paraphrasing aspect unknowingly. I have information through this course, that I can get discount or waiver on article processing fees, this way, funding will not be " the " limiting factor in my research career. As the popular slogan goes, " information is power " , I can now distinguish predatory journals and I will not be channeling energy and efforts in the wrong direction, because a great effort on a paper in a predatory journal amounts to wasted efforts, and nothing to show for it. In conclusion, ethics is about right or wrong, and being unethical in research can result in a paper being rejected or retracted.

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Confronting ableism: Reflections on the ethical failings of academic health research

By Joanne Hunt and Charlotte Blease.

Health research, much like healthcare, is often plagued by persistent ableism. These two issues are likely connected.

Disabled people across the globe experience a multitude of institutional, physical and attitudinal barriers to healthcare. Beyond inaccessible clinical environments and equipment, people with disabilities are confronted with clinical ambivalence, discriminatory attitudes and lack of understanding toward disability.

Such barriers intersect with health and wider social disparities . For example, relative to non-disabled people, people with disabilities are at increased risk of physical and mental co-morbidities, report lower levels of wellbeing, and are more likely to die younger. Compounding matters, disabled people are also less likely to be employed than non-disabled people and earn less when in work, even though disability incurs higher living costs. Perhaps unsurprisingly, disabled people are more likely to live in poverty than their non-disabled counterparts. Addressing such disparities requires carefully focused research.

In this regard, disabled researchers are well-placed to understand how health policy and practice can further marginalise and disadvantage disabled people. Researchers with disabilities may be more willing and able to spot gaps in knowledge and to ask difficult questions that are necessary to effectuate change.

Yet, the same physical and attitudinal barriers confronting disabled people in the healthcare arena also exist in the academy . In fact, academic ableism appears to be particularly virulent in science, technology, engineering and maths (STEM) or STEM(H) – the latter explicitly acknowledging health research.

So, whilst disabled people must grapple with healthcare systems that disadvantage those in greatest need, researchers with first-hand experience of such disadvantage are marginalised from the very knowledge-producing arenas that would reap greatest collective benefit.

Moreover, as one of us (Jo) knows only too well, whilst a ‘ leaky pipeline’ plagues minoritised groups in the health and wider scientific research arena, this pipeline is missing altogether for disabled people who are largely or entirely confined to the home.

Jo, who has a background in psychology and an interest in disability-affirmative healthcare, has been largely confined to the home in the UK for over a decade, interspersed with being confined to bed for weeks or months at a time. Her primary diagnoses – hypermobile Ehlers-Danlos syndrome (hEDS) and  myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)  – not only mean that her daily activities are severely restricted, but that Jo must navigate a well-documented climate of disbelief vis-à-vis what have been termed energy limiting conditions . For example, Jo had to wait over thirty years for a diagnosis of hEDS, only to find that there are no established care pathways available to her, and that the onus is now on her to figure out how to navigate life with this condition.

Similar discriminatory landscapes extend to the academy, where Jo has struggled to find a PhD programme that can accommodate her need to conduct research via remote (online) access.

Yet, Jo’s case is one case among many. It can be viewed as merely a first symptom in a much larger epidemic of issues within healthcare. Despite society’s willingness to accommodate faculty and students during successive lockdowns via remote-working practices, some disabled faculty are being refused similar provisions as institutions revert to ‘normal’ – with an inevitable impact on disability-affirmative knowledge production.

In our new paper , we explore these exclusions and their ramifications through the lens of epistemic injustice , and suggest that academic policy and practice routinely subjects researchers with disabilities to harms in their capacity as ‘knowers’.

If we truly value diversity, equity and inclusion, and wish to make healthcare safer and more inclusive, then the academy must become more accessible. People with lived experience of illness can often identify how health policy and practice is failing patients and compounding disability, and often have well-considered ideas about how things could change for the better.

Paper title: Epistemic injustice, healthcare disparities and the missing pipeline: Reflections on the exclusion of disabled scholars from health research

Authors: Joanne Hunt and Charlotte Blease

Affiliations:

JH: Department of Women’s and Children’s Health, Uppsala University, Sweden.

CB: Department of Women’s and Children’s Health, Uppsala University, Sweden. Department of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, US.

Competing interests : None

Social media accounts of post authors :  @JoElizaHunt     @crblease

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BMJ Journals

Ethical Issues in Research: Perceptions of Researchers, Research Ethics Board Members and Research Ethics Experts

• Published: 12 August 2022
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In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to document the ethical issues experienced by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community.

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Introduction

Research includes a set of activities in which researchers use various structured methods to contribute to the development of knowledge, whether this knowledge is theoretical, fundamental, or applied (Drolet & Ruest, accepted ). University research is carried out in a highly competitive environment that is characterized by ever-increasing demands (i.e., on time, productivity), insufficient access to research funds, and within a market economy that values productivity and speed often to the detriment of quality or rigour – this research context creates a perfect recipe for breaches in research ethics, like research misbehaviour or misconduct (i.e., conduct that is ethically questionable or unacceptable because it contravenes the accepted norms of responsible conduct of research or compromises the respect of core ethical values that are widely held by the research community) (Drolet & Girard, 2020 ; Sieber, 2004 ). Problematic ethics and integrity issues – e.g., conflicts of interest, falsification of data, non-respect of participants’ rights, and plagiarism, to name but a few – have the potential to both undermine the credibility of research and lead to negative consequences for many stakeholders, including researchers, research assistants and personnel, research participants, academic institutions, and society as a whole (Drolet & Girard, 2020 ). It is thus evident that the academic community should be able to identify these different ethical issues in order to evaluate the nature of the risks that they pose (and for whom), and then work towards their prevention or management (i.e., education, enhanced policies and procedures, risk mitigation strategies).

In this article, we define an “ethical issue” as any situation that may compromise, in whole or in part, the respect of at least one moral value (Swisher et al., 2005 ) that is considered socially legitimate and should thus be respected. In general, ethical issues occur at three key moments or stages of the research process: (1) research design (i.e., conception, project planning), (2) research conduct (i.e., data collection, data analysis) and (3) knowledge translation or communication (e.g., publications of results, conferences, press releases) (Drolet & Ruest, accepted ). According to Sieber ( 2004 ), ethical issues in research can be classified into five categories, related to: (a) communication with participants and the community, (b) acquisition and use of research data, (c) external influence on research, (d) risks and benefits of the research, and (e) selection and use of research theories and methods. Many of these issues are related to breaches of research ethics norms, misbehaviour or research misconduct. Bruhn et al., ( 2002 ) developed a typology of misbehaviour and misconduct in academia that can be used to judge the seriousness of different cases. This typology takes into consideration two axes of reflection: (a) the origin of the situation (i.e., is it the researcher’s own fault or due to the organizational context?), and (b) the scope and severity (i.e., is this the first instance or a recurrent behaviour? What is the nature of the situation? What are the consequences, for whom, for how many people, and for which organizations?).

A previous detailed review of the international literature on ethical issues in research revealed several interesting findings (Beauchemin et al., 2021 ). Indeed, the current literature is dominated by descriptive ethics, i.e., the sharing by researchers from various disciplines of the ethical issues they have personally experienced. While such anecdotal documentation is relevant, it is insufficient because it does not provide a global view of the situation. Among the reviewed literature, empirical studies were in the minority (Table  1 ) – only about one fifth of the sample (n = 19) presented empirical research findings on ethical issues in research. The first of these studies was conducted almost 50 years ago (Hunt et al., 1984 ), with the remainder conducted in the 1990s. Eight studies were conducted in the United States (n = 8), five in Canada (n = 5), three in England (n = 3), two in Sweden (n = 2) and one in Ghana (n = 1).

Further, the majority of studies in our sample (n = 12) collected the perceptions of a homogeneous group of participants, usually researchers (n = 14) and sometimes health professionals (n = 6). A minority of studies (n = 7) triangulated the perceptions of diverse research stakeholders (i.e., researchers and research participants, or students). To our knowledge, only one study has examined perceptions of ethical issues in research by research ethics board members (REB; Institutional Review Boards [IRB] in the USA), and none to date have documented the perceptions of research ethics experts. Finally, nine studies (n = 9) adopted a qualitative design, seven studies (n = 7) a quantitative design, and three (n = 3) a mixed-methods design.

More studies using empirical research methods are needed to better identify broader trends, to enrich discussions on the values that should govern responsible conduct of research in the academic community, and to evaluate the means by which these values can be supported in practice (Bahn, 2012 ; Beauchemin et al., 2021 ; Bruhn et al., 2002 ; Henderson et al., 2013 ; Resnik & Elliot, 2016; Sieber 2004 ). To this end, we conducted an empirical qualitative study to document the perceptions and experiences of a heterogeneous group of Canadian researchers, REB members, and research ethics experts, to answer the following broad question: What are the ethical issues in research?

Research Methods

Research design.

A qualitative research approach involving individual semi-structured interviews was used to systematically document ethical issues (De Poy & Gitlin, 2010 ; Hammell et al., 2000 ). Specifically, a descriptive phenomenological approach inspired by the philosophy of Husserl was used (Husserl, 1970 , 1999 ), as it is recommended for documenting the perceptions of ethical issues raised by various practices (Hunt & Carnavale, 2011 ).

Ethical considerations

The principal investigator obtained ethics approval for this project from the Research Ethics Board of the Université du Québec à Trois-Rivières (UQTR). All members of the research team signed a confidentiality agreement, and research participants signed the consent form after reading an information letter explaining the nature of the research project.

Sampling and recruitment

As indicated above, three types of participants were sought: (1) researchers from different academic disciplines conducting research (i.e., theoretical, fundamental or empirical) in Canadian universities; (2) REB members working in Canadian organizations responsible for the ethical review, oversight or regulation of research; and (3) research ethics experts, i.e., academics or ethicists who teach research ethics, conduct research in research ethics, or are scholars who have acquired a specialization in research ethics. To be included in the study, participants had to work in Canada, speak and understand English or French, and be willing to participate in the study. Following Thomas and Polio’s (2002) recommendation to recruit between six and twelve participants (for a homogeneous sample) to ensure data saturation, for our heterogeneous sample, we aimed to recruit approximately twelve participants in order to obtain data saturation. Having used this method several times in related projects in professional ethics, data saturation is usually achieved with 10 to 15 participants (Drolet & Goulet, 2018 ; Drolet & Girard, 2020 ; Drolet et al., 2020 ). From experience, larger samples only serve to increase the degree of data saturation, especially in heterogeneous samples (Drolet et al., 2017 , 2019 ; Drolet & Maclure, 2016 ).

Purposive sampling facilitated the identification of participants relevant to documenting the phenomenon in question (Fortin, 2010 ). To ensure a rich and most complete representation of perceptions, we sought participants with varied and complementary characteristics with regards to the social roles they occupy in research practice (Drolet & Girard, 2020 ). A triangulation of sources was used for the recruitment (Bogdan & Biklen, 2006 ). The websites of Canadian universities and Canadian health institution REBs, as well as those of major Canadian granting agencies (i.e., the Canadian Institutes of Health Research, the Natural Sciences and Engineering Research Council of Canada, and the Social Sciences and Humanities Research Council of Canada, Fonds de recherche du Quebec), were searched to identify individuals who might be interested in participating in the study. Further, people known by the research team for their knowledge and sensitivity to ethical issues in research were asked to participate. Research participants were also asked to suggest other individuals who met the study criteria.

Data Collection

Two tools were used for data collecton: (a) a socio-demographic questionnaire, and (b) a semi-structured individual interview guide. English and French versions of these two documents were used and made available, depending on participant preferences. In addition, although the interview guide contained the same questions, they were adapted to participants’ specific roles (i.e., researcher, REB member, research ethics expert). When contacted by email by the research assistant, participants were asked to confirm under which role they wished to participate (because some participants might have multiple, overlapping responsibilities) and they were sent the appropriate interview guide.

The interview guides each had two parts: an introduction and a section on ethical issues. The introduction consisted of general questions to put the participant at ease (i.e., “Tell me what a typical day at work is like for you”). The section on ethical issues was designed to capture the participant’s perceptions through questions such as: “Tell me three stories you have experienced at work that involve an ethical issue?” and “Do you feel that your organization is doing enough to address, manage, and resolve ethical issues in your work?”. Although some interviews were conducted in person, the majority were conducted by videoconference to promote accessibility and because of the COVID-19 pandemic. Interviews were digitally recorded so that the verbatim could be transcribed in full, and varied between 40 and 120 min in duration, with an average of 90 min. Research assistants conducted the interviews and transcribed the verbatim.

Data Analysis

The socio-demographic questionnaires were subjected to simple descriptive statistical analyses (i.e., means and totals), and the semi-structured interviews were subjected to qualitative analysis. The steps proposed by Giorgi ( 1997 ) for a Husserlian phenomenological reduction of the data were used. After collecting, recording, and transcribing the interviews, all verbatim were analyzed by at least two analysts: a research assistant (2nd author of this article) and the principal investigator (1st author) or a postdoctoral fellow (3rd author). The repeated reading of the verbatim allowed the first analyst to write a synopsis, i.e., an initial extraction of units of meaning. The second analyst then read the synopses, which were commented and improved if necessary. Agreement between analysts allowed the final drafting of the interview synopses, which were then analyzed by three analysts to generate and organize the units of meaning that emerged from the qualitative data.

Participants

Sixteen individuals (n = 16) participated in the study, of whom nine (9) identified as female and seven (7) as male (Table  2 ). Participants ranged in age from 22 to 72 years, with a mean age of 47.5 years. Participants had between one (1) and 26 years of experience in the research setting, with an average of 14.3 years of experience. Participants held a variety of roles, including: REB members (n = 11), researchers (n = 10), research ethics experts (n = 4), and research assistant (n = 1). As mentioned previously, seven (7) participants held more than one role, i.e., REB member, research ethics expert, and researcher. The majority (87.5%) of participants were working in Quebec, with the remaining working in other Canadian provinces. Although all participants considered themselves to be francophone, one quarter (n = 4) identified themselves as belonging to a cultural minority group.

With respect to their academic background, most participants (n = 9) had a PhD, three (3) had a post-doctorate, two (2) had a master’s degree, and two (2) had a bachelor’s degree. Participants came from a variety of disciplines: nine (9) had a specialty in the humanities or social sciences, four (4) in the health sciences and three (3) in the natural sciences. In terms of their knowledge of ethics, five (5) participants reported having taken one university course entirely dedicated to ethics, four (4) reported having taken several university courses entirely dedicated to ethics, three (3) had a university degree dedicated to ethics, while two (2) only had a few hours or days of training in ethics and two (2) reported having no knowledge of ethics.

• Ethical issues

As Fig.  1 illustrates, ten units of meaning emerge from the data analysis, namely: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. To illustrate the results, excerpts from verbatim interviews are presented in the following sub-sections. Most of the excerpts have been translated into English as the majority of interviews were conducted with French-speaking participants.

Ethical issues in research according to the participants

Research Integrity

The research environment is highly competitive and performance-based. Several participants, in particular researchers and research ethics experts, felt that this environment can lead both researchers and research teams to engage in unethical behaviour that reflects a lack of research integrity. For example, as some participants indicated, competition for grants and scientific publications is sometimes so intense that researchers falsify research results or plagiarize from colleagues to achieve their goals.

Some people will lie or exaggerate their research findings in order to get funding. Then, you see it afterwards, you realize: “ah well, it didn’t work, but they exaggerated what they found and what they did” (participant 14). Another problem in research is the identification of authors when there is a publication. Very often, there are authors who don’t even know what the publication is about and that their name is on it. (…) The time that it surprised me the most was just a few months ago when I saw someone I knew who applied for a teaching position. He got it I was super happy for him. Then I looked at his publications and … there was one that caught my attention much more than the others, because I was in it and I didn’t know what that publication was. I was the second author of a publication that I had never read (participant 14). I saw a colleague who had plagiarized another colleague. [When the colleague] found out about it, he complained. So, plagiarism is a serious [ethical breach]. I would also say that there is a certain amount of competition in the university faculties, especially for grants (…). There are people who want to win at all costs or get as much as possible. They are not necessarily going to consider their colleagues. They don’t have much of a collegial spirit (participant 10).

These examples of research misbehaviour or misconduct are sometimes due to or associated with situations of conflicts of interest, which may be poorly managed by certain researchers or research teams, as noted by many participants.

Conflict of interest

The actors and institutions involved in research have diverse interests, like all humans and institutions. As noted in Chap. 7 of the Canadian Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2, 2018),

“researchers and research students hold trust relationships, either directly or indirectly, with participants, research sponsors, institutions, their professional bodies and society. These trust relationships can be put at risk by conflicts of interest that may compromise independence, objectivity or ethical duties of loyalty. Although the potential for such conflicts has always existed, pressures on researchers (i.e., to delay or withhold dissemination of research outcomes or to use inappropriate recruitment strategies) heighten concerns that conflicts of interest may affect ethical behaviour” (p. 92).

The sources of these conflicts are varied and can include interpersonal conflicts, financial partnerships, third-party pressures, academic or economic interests, a researcher holding multiple roles within an institution, or any other incentive that may compromise a researcher’s independence, integrity, and neutrality (TCPS2, 2018). While it is not possible to eliminate all conflicts of interest, it is important to manage them properly and to avoid temptations to behave unethically.

Ethical temptations correspond to situations in which people are tempted to prioritize their own interests to the detriment of the ethical goods that should, in their own context, govern their actions (Swisher et al., 2005 ). In the case of researchers, this refers to situations that undermine independence, integrity, neutrality, or even the set of principles that govern research ethics (TCPS2, 2018) or the responsible conduct of research. According to study participants, these types of ethical issues frequently occur in research. Many participants, especially researchers and REB members, reported that conflicts of interest can arise when members of an organization make decisions to obtain large financial rewards or to increase their academic profile, often at the expense of the interests of members of their research team, research participants, or even the populations affected by their research.

A company that puts money into making its drug work wants its drug to work. So, homeopathy is a good example, because there are not really any consequences of homeopathy, there are not very many side effects, because there are no effects at all. So, it’s not dangerous, but it’s not a good treatment either. But some people will want to make it work. And that’s a big issue when you’re sitting at a table and there are eight researchers, and there are two or three who are like that, and then there are four others who are neutral, and I say to myself, this is not science. I think that this is a very big ethical issue (participant 14). There are also times in some research where there will be more links with pharmaceutical companies. Obviously, there are then large amounts of money that will be very interesting for the health-care institutions because they still receive money for clinical trials. They’re still getting some compensation because its time consuming for the people involved and all that. The pharmaceutical companies have money, so they will compensate, and that is sometimes interesting for the institutions, and since we are a bit caught up in this, in the sense that we have no choice but to accept it. (…) It may not be the best research in the world, there may be a lot of side effects due to the drugs, but it’s good to accept it, we’re going to be part of the clinical trial (participant 3). It is integrity, what we believe should be done or said. Often by the pressure of the environment, integrity is in tension with the pressures of the environment, so it takes resistance, it takes courage in research. (…) There were all the debates there about the problems of research that was funded and then the companies kept control over what was written. That was really troubling for a lot of researchers (participant 5).

Further, these situations sometimes have negative consequences for research participants as reported by some participants.

Respect for research participants

Many research projects, whether they are psychosocial or biomedical in nature, involve human participants. Relationships between the members of research teams and their research participants raise ethical issues that can be complex. Research projects must always be designed to respect the rights and interests of research participants, and not just those of researchers. However, participants in our study – i.e., REB members, researchers, and research ethics experts – noted that some research teams seem to put their own interests ahead of those of research participants. They also emphasized the importance of ensuring the respect, well-being, and safety of research participants. The ethical issues related to this unit of meaning are: respect for free, informed and ongoing consent of research participants; respect for and the well-being of participants; data protection and confidentiality; over-solicitation of participants; ownership of the data collected on participants; the sometimes high cost of scientific innovations and their accessibility; balance between the social benefits of research and the risks to participants (particularly in terms of safety); balance between collective well-being (development of knowledge) and the individual rights of participants; exploitation of participants; paternalism when working with populations in vulnerable situations; and the social acceptability of certain types of research. The following excerpts present some of these issues.

Where it disturbs me ethically is in the medical field – because it’s more in the medical field that we’re going to see this – when consent forms are presented to patients to solicit them as participants, and then [these forms] have an average of 40 pages. That annoys me. When they say that it has to be easy to understand and all that, adapted to the language, and then the hyper-technical language plus there are 40 pages to read, I don’t understand how you’re going to get informed consent after reading 40 pages. (…) For me, it doesn’t work. I read them to evaluate them and I have a certain level of education and experience in ethics, and there are times when I don’t understand anything (participant 2). There is a lot of pressure from researchers who want to recruit research participants (…). The idea that when you enter a health care institution, you become a potential research participant, when you say “yes to a research, you check yes to all research”, then everyone can ask you. I think that researchers really have this fantasy of saying to themselves: “as soon as people walk through the door of our institution, they become potential participants with whom we can communicate and get them involved in all projects”. There’s a kind of idea that, yes, it can be done, but it has to be somewhat supervised to avoid over-solicitation (…). Researchers are very interested in facilitating recruitment and making it more fluid, but perhaps to the detriment of confidentiality, privacy, and respect; sometimes that’s what it is, to think about what type of data you’re going to have in your bank of potential participants? Is it just name and phone number or are you getting into more sensitive information? (participant 9).

In addition, one participant reported that their university does not provide the resources required to respect the confidentiality of research participants.

The issue is as follows: researchers, of course, commit to protecting data with passwords and all that, but we realize that in practice, it is more difficult. It is not always as protected as one might think, because professor-researchers will run out of space. Will the universities make rooms available to researchers, places where they can store these things, especially when they have paper documentation, and is there indeed a guarantee of confidentiality? Some researchers have told me: “Listen; there are even filing cabinets in the corridors”. So, that certainly poses a concrete challenge. How do we go about challenging the administrative authorities? Tell them it’s all very well to have an ethics committee, but you have to help us, you also have to make sure that the necessary infrastructures are in place so that what we are proposing is really put into practice (participant 4).

If the relationships with research participants are likely to raise ethical issues, so too are the relationships with students, notably research assistants. On this topic, several participants discussed the lack of supervision or recognition offered to research assistants by researchers as well as the power imbalances between members of the research team.

Lack of Supervision and Power Imbalances

Many research teams are composed not only of researchers, but also of students who work as research assistants. The relationship between research assistants and other members of research teams can sometimes be problematic and raise ethical issues, particularly because of the inevitable power asymmetries. In the context of this study, several participants – including a research assistant, REB members, and researchers – discussed the lack of supervision or recognition of the work carried out by students, psychological pressure, and the more or less well-founded promises that are sometimes made to students. Participants also mentioned the exploitation of students by certain research teams, which manifest when students are inadequately paid, i.e., not reflective of the number of hours actually worked, not a fair wage, or even a wage at all.

[As a research assistant], it was more of a feeling of distress that I felt then because I didn’t know what to do. (…) I was supposed to get coaching or be supported, but I didn’t get anything in the end. It was like, “fix it by yourself”. (…) All research assistants were supposed to be supervised, but in practice they were not (participant 1). Very often, we have a master’s or doctoral student that we put on a subject and we consider that the project will be well done, while the student is learning. So, it happens that the student will do a lot of work and then we realize that the work is poorly done, and it is not necessarily the student’s fault. He wasn’t necessarily well supervised. There are directors who have 25 students, and they just don’t supervise them (participant 14). I think it’s really the power relationship. I thought to myself, how I saw my doctorate, the beginning of my research career, I really wanted to be in that laboratory, but they are the ones who are going to accept me or not, so what do I do to be accepted? I finally accept their conditions [which was to work for free]. If these are the conditions that are required to enter this lab, I want to go there. So, what do I do, well I accepted. It doesn’t make sense, but I tell myself that I’m still privileged, because I don’t have so many financial worries, one more reason to work for free, even though it doesn’t make sense (participant 1). In research, we have research assistants. (…). The fact of using people… so that’s it, you have to take into account where they are, respect them, but at the same time they have to show that they are there for the research. In English, we say “carry” or take care of people. With research assistants, this is often a problem that I have observed: for grant machines, the person is the last to be found there. Researchers, who will take, use student data, without giving them the recognition for it (participant 5). The problem at our university is that they reserve funding for Canadian students. The doctoral clientele in my field is mostly foreign students. So, our students are poorly funded. I saw one student end up in the shelter, in a situation of poverty. It ended very badly for him because he lacked financial resources. Once you get into that dynamic, it’s very hard to get out. I was made aware of it because the director at the time had taken him under her wing and wanted to try to find a way to get him out of it. So, most of my students didn’t get funded (participant 16). There I wrote “manipulation”, but it’s kind of all promises all the time. I, for example, was promised a lot of advancement, like when I got into the lab as a graduate student, it was said that I had an interest in [this particular area of research]. I think there are a lot of graduate students who must have gone through that, but it is like, “Well, your CV has to be really good, if you want to do a lot of things and big things. If you do this, if you do this research contract, the next year you could be the coordinator of this part of the lab and supervise this person, get more contracts, be paid more. Let’s say: you’ll be invited to go to this conference, this big event”. They were always dangling something, but you have to do that first to get there. But now, when you’ve done that, you have to do this business. It’s like a bit of manipulation, I think. That was very hard to know who is telling the truth and who is not (participant 1).

These ethical issues have significant negative consequences for students. Indeed, they sometimes find themselves at the mercy of researchers, for whom they work, struggling to be recognized and included as authors of an article, for example, or to receive the salary that they are due. For their part, researchers also sometimes find themselves trapped in research structures that can negatively affect their well-being. As many participants reported, researchers work in organizations that set very high productivity standards and in highly competitive contexts, all within a general culture characterized by individualism.

Individualism and performance

Participants, especially researchers, discussed the culture of individualism and performance that characterizes the academic environment. In glorifying excellence, some universities value performance and productivity, often at the expense of psychological well-being and work-life balance (i.e., work overload and burnout). Participants noted that there are ethical silences in their organizations on this issue, and that the culture of individualism and performance is not challenged for fear of retribution or simply to survive, i.e., to perform as expected. Participants felt that this culture can have a significant negative impact on the quality of the research conducted, as research teams try to maximize the quantity of their work (instead of quality) in a highly competitive context, which is then exacerbated by a lack of resources and support, and where everything must be done too quickly.

The work-life balance with the professional ethics related to work in a context where you have too much and you have to do a lot, it is difficult to balance all that and there is a lot of pressure to perform. If you don’t produce enough, that’s it; after that, you can’t get any more funds, so that puts pressure on you to do more and more and more (participant 3). There is a culture, I don’t know where it comes from, and that is extremely bureaucratic. If you dare to raise something, you’re going to have many, many problems. They’re going to make you understand it. So, I don’t talk. It is better: your life will be easier. I think there are times when you have to talk (…) because there are going to be irreparable consequences. (…) I’m not talking about a climate of terror, because that’s exaggerated, it’s not true, people are not afraid. But people close their office door and say nothing because it’s going to make their work impossible and they’re not going to lose their job, they’re not going to lose money, but researchers need time to be focused, so they close their office door and say nothing (participant 16).

Researchers must produce more and more, and they feel little support in terms of how to do such production, ethically, and how much exactly they are expected to produce. As this participant reports, the expectation is an unspoken rule: more is always better.

It’s sometimes the lack of a clear line on what the expectations are as a researcher, like, “ah, we don’t have any specific expectations, but produce, produce, produce, produce.” So, in that context, it’s hard to be able to put the line precisely: “have I done enough for my work?” (participant 3).

Inadequate ethical Guidance

While the productivity expectation is not clear, some participants – including researchers, research ethics experts, and REB members – also felt that the ethical expectations of some REBs were unclear. The issue of the inadequate ethical guidance of research includes the administrative mechanisms to ensure that research projects respect the principles of research ethics. According to those participants, the forms required for both researchers and REB members are increasingly long and numerous, and one participant noted that the standards to be met are sometimes outdated and disconnected from the reality of the field. Multicentre ethics review (by several REBs) was also critiqued by a participant as an inefficient method that encumbers the processes for reviewing research projects. Bureaucratization imposes an ever-increasing number of forms and ethics guidelines that actually hinder researchers’ ethical reflection on the issues at stake, leading the ethics review process to be perceived as purely bureaucratic in nature.

The ethical dimension and the ethical review of projects have become increasingly bureaucratized. (…) When I first started working (…) it was less bureaucratic, less strict then. I would say [there are now] tons of forms to fill out. Of course, we can’t do without it, it’s one of the ways of marking out ethics and ensuring that there are ethical considerations in research, but I wonder if it hasn’t become too bureaucratized, so that it’s become a kind of technical reflex to fill out these forms, and I don’t know if people really do ethical reflection as such anymore (participant 10). The fundamental structural issue, I would say, is the mismatch between the normative requirements and the real risks posed by the research, i.e., we have many, many requirements to meet; we have very long forms to fill out but the research projects we evaluate often pose few risks (participant 8). People [in vulnerable situations] were previously unable to participate because of overly strict research ethics rules that were to protect them, but in the end [these rules] did not protect them. There was a perverse effect, because in the end there was very little research done with these people and that’s why we have very few results, very little evidence [to support practices with these populations] so it didn’t improve the quality of services. (…) We all understand that we have to be careful with that, but when the research is not too risky, we say to ourselves that it would be good because for once a researcher who is interested in that population, because it is not a very popular population, it would be interesting to have results, but often we are blocked by the norms, and then we can’t accept [the project] (participant 2).

Moreover, as one participant noted, accessing ethics training can be a challenge.

There is no course on research ethics. […] Then, I find that it’s boring because you go through university and you come to do your research and you know how to do quantitative and qualitative research, but all the research ethics, where do you get this? I don’t really know (participant 13).

Yet, such training could provide relevant tools to resolve, to some extent, the ethical issues that commonly arise in research. That said, and as noted by many participants, many ethical issues in research are related to social injustices over which research actors have little influence.

Social Injustices

For many participants, notably researchers, the issues that concern social injustices are those related to power asymmetries, stigma, or issues of equity, diversity, and inclusion, i.e., social injustices related to people’s identities (Blais & Drolet, 2022 ). Participants reported experiencing or witnessing discrimination from peers, administration, or lab managers. Such oppression is sometimes cross-sectional and related to a person’s age, cultural background, gender or social status.

I have my African colleague who was quite successful when he arrived but had a backlash from colleagues in the department. I think it’s unconscious, nobody is overtly racist. But I have a young person right now who is the same, who has the same success, who got exactly the same early career award and I don’t see the same backlash. He’s just as happy with what he’s doing. It’s normal, they’re young and they have a lot of success starting out. So, I think there is discrimination. Is it because he is African? Is it because he is black? I think it’s on a subconscious level (participant 16).

Social injustices were experienced or reported by many participants, and included issues related to difficulties in obtaining grants or disseminating research results in one’s native language (i.e., even when there is official bilingualism) or being considered credible and fundable in research when one researcher is a woman.

If you do international research, there are things you can’t talk about (…). It is really a barrier to research to not be able to (…) address this question [i.e. the question of inequalities between men and women]. Women’s inequality is going to be addressed [but not within the country where the research takes place as if this inequality exists elsewhere but not here]. There are a lot of women working on inequality issues, doing work and it’s funny because I was talking to a young woman who works at Cairo University and she said to me: “Listen, I saw what you had written, you’re right. I’m willing to work on this but guarantee me a position at your university with a ticket to go”. So yes, there are still many barriers [for women in research] (participant 16).

Because of the varied contextual characteristics that intervene in their occurrence, these social injustices are also related to distributive injustices, as discussed by many participants.

Distributive Injustices

Although there are several views of distributive justice, a classical definition such as that of Aristotle ( 2012 ), describes distributive justice as consisting in distributing honours, wealth, and other social resources or benefits among the members of a community in proportion to their alleged merit. Justice, then, is about determining an equitable distribution of common goods. Contemporary theories of distributive justice are numerous and varied. Indeed, many authors (e.g., Fraser 2011 ; Mills, 2017 ; Sen, 2011 ; Young, 2011 ) have, since Rawls ( 1971 ), proposed different visions of how social burdens and benefits should be shared within a community to ensure equal respect, fairness, and distribution. In our study, what emerges from participants’ narratives is a definite concern for this type of justice. Women researchers, francophone researchers, early career researchers or researchers belonging to racialized groups all discussed inequities in the distribution of research grants and awards, and the extra work they need to do to somehow prove their worth. These inequities are related to how granting agencies determine which projects will be funded.

These situations make me work 2–3 times harder to prove myself and to show people in power that I have a place as a woman in research (participant 12). Number one: it’s conservative thinking. The older ones control what comes in. So, the younger people have to adapt or they don’t get funded (participant 14).

Whether it is discrimination against stigmatized or marginalized populations or interest in certain hot topics, granting agencies judge research projects according to criteria that are sometimes questionable, according to those participants. Faced with difficulties in obtaining funding for their projects, several strategies – some of which are unethical – are used by researchers in order to cope with these situations.

Sometimes there are subjects that everyone goes to, such as nanotechnology (…), artificial intelligence or (…) the therapeutic use of cannabis, which are very fashionable, and this is sometimes to the detriment of other research that is just as relevant, but which is (…), less sexy, less in the spirit of the time. (…) Sometimes this can lead to inequities in the funding of certain research sectors (participant 9). When we use our funds, we get them given to us, we pretty much say what we think we’re going to do with them, but things change… So, when these things change, sometimes it’s an ethical decision, but by force of circumstances I’m obliged to change the project a little bit (…). Is it ethical to make these changes or should I just let the money go because I couldn’t use it the way I said I would? (participant 3).

Moreover, these distributional injustices are not only linked to social injustices, but also epistemic injustices. Indeed, the way in which research honours and grants are distributed within the academic community depends on the epistemic authority of the researchers, which seems to vary notably according to their language of use, their age or their gender, but also to the research design used (inductive versus deductive), their decision to use (or not use) animals in research, or to conduct activist research.

Epistemic injustices

The philosopher Fricker ( 2007 ) conceptualized the notions of epistemic justice and injustice. Epistemic injustice refers to a form of social inequality that manifests itself in the access, recognition, and production of knowledge as well as the various forms of ignorance that arise (Godrie & Dos Santos, 2017 ). Addressing epistemic injustice necessitates acknowledging the iniquitous wrongs suffered by certain groups of socially stigmatized individuals who have been excluded from knowledge, thus limiting their abilities to interpret, understand, or be heard and account for their experiences. In this study, epistemic injustices were experienced or reported by some participants, notably those related to difficulties in obtaining grants or disseminating research results in one’s native language (i.e., even when there is official bilingualism) or being considered credible and fundable in research when a researcher is a woman or an early career researcher.

I have never sent a grant application to the federal government in English. I have always done it in French, even though I know that when you receive the review, you can see that reviewers didn’t understand anything because they are English-speaking. I didn’t want to get in the boat. It’s not my job to translate, because let’s be honest, I’m not as good in English as I am in French. So, I do them in my first language, which is the language I’m most used to. Then, technically at the administrative level, they are supposed to be able to do it, but they are not good in French. (…) Then, it’s a very big Canadian ethical issue, because basically there are technically two official languages, but Canada is not a bilingual country, it’s a country with two languages, either one or the other. (…) So I was not funded (participant 14).

Researchers who use inductive (or qualitative) methods observed that their projects are sometimes less well reviewed or understood, while research that adopts a hypothetical-deductive (or quantitative) or mixed methods design is better perceived, considered more credible and therefore more easily funded. Of course, regardless of whether a research project adopts an inductive, deductive or mixed-methods scientific design, or whether it deals with qualitative or quantitative data, it must respect a set of scientific criteria. A research project should achieve its objectives by using proven methods that, in the case of inductive research, are credible, reliable, and transferable or, in the case of deductive research, generalizable, objective, representative, and valid (Drolet & Ruest, accepted ). Participants discussing these issues noted that researchers who adopt a qualitative design or those who question the relevance of animal experimentation or are not militant have sometimes been unfairly devalued in their epistemic authority.

There is a mini war between quantitative versus qualitative methods, which I think is silly because science is a method. If you apply the method well, it doesn’t matter what the field is, it’s done well and it’s perfect ” (participant 14). There is also the issue of the place of animals in our lives, because for me, ethics is human ethics, but also animal ethics. Then, there is a great evolution in society on the role of the animal… with the new law that came out in Quebec on the fact that animals are sensitive beings. Then, with the rise of the vegan movement, [we must ask ourselves]: “Do animals still have a place in research?” That’s a big question and it also means that there are practices that need to evolve, but sometimes there’s a disconnection between what’s expected by research ethics boards versus what’s expected in the field (participant 15). In research today, we have more and more research that is militant from an ideological point of view. And so, we have researchers, because they defend values that seem important to them, we’ll talk for example about the fight for equality and social justice. They have pressure to defend a form of moral truth and have the impression that everyone thinks like them or should do so, because they are defending a moral truth. This is something that we see more and more, namely the lack of distance between ideology and science (participant 8).

The combination or intersectionality of these inequities, which seems to be characterized by a lack of ethical support and guidance, is experienced in the highly competitive and individualistic context of research; it provides therefore the perfect recipe for researchers to experience ethical distress.

Ethical distress

The concept of “ethical distress” refers to situations in which people know what they should do to act ethically, but encounter barriers, generally of an organizational or systemic nature, limiting their power to act according to their moral or ethical values (Drolet & Ruest, 2021 ; Jameton, 1984 ; Swisher et al., 2005 ). People then run the risk of finding themselves in a situation where they do not act as their ethical conscience dictates, which in the long term has the potential for exhaustion and distress. The examples reported by participants in this study point to the fact that researchers in particular may be experiencing significant ethical distress. This distress takes place in a context of extreme competition, constant injunctions to perform, and where administrative demands are increasingly numerous and complex to complete, while paradoxically, they lack the time to accomplish all their tasks and responsibilities. Added to these demands are a lack of resources (human, ethical, and financial), a lack of support and recognition, and interpersonal conflicts.

We are in an environment, an elite one, you are part of it, you know what it is: “publish or perish” is the motto. Grants, there is a high level of performance required, to do a lot, to publish, to supervise students, to supervise them well, so yes, it is clear that we are in an environment that is conducive to distress. (…). Overwork, definitely, can lead to distress and eventually to exhaustion. When you know that you should take the time to read the projects before sharing them, but you don’t have the time to do that because you have eight that came in the same day, and then you have others waiting… Then someone rings a bell and says: “ah but there, the protocol is a bit incomplete”. Oh yes, look at that, you’re right. You make up for it, but at the same time it’s a bit because we’re in a hurry, we don’t necessarily have the resources or are able to take the time to do things well from the start, we have to make up for it later. So yes, it can cause distress (participant 9). My organization wanted me to apply in English, and I said no, and everyone in the administration wanted me to apply in English, and I always said no. Some people said: “Listen, I give you the choice”, then some people said: “Listen, I agree with you, but if you’re not [submitting] in English, you won’t be funded”. Then the fact that I am young too, because very often they will look at the CV, they will not look at the project: “ah, his CV is not impressive, we will not finance him”. This is complete nonsense. The person is capable of doing the project, the project is fabulous: we fund the project. So, that happened, organizational barriers: that happened a lot. I was not eligible for Quebec research funds (…). I had big organizational barriers unfortunately (participant 14). At the time of my promotion, some colleagues were not happy with the type of research I was conducting. I learned – you learn this over time when you become friends with people after you enter the university – that someone was against me. He had another candidate in mind, and he was angry about the selection. I was under pressure for the first three years until my contract was renewed. I almost quit at one point, but another colleague told me, “No, stay, nothing will happen”. Nothing happened, but these issues kept me awake at night (participant 16).

This difficult context for many researchers affects not only the conduct of their own research, but also their participation in research. We faced this problem in our study, despite the use of multiple recruitment methods, including more than 200 emails – of which 191 were individual solicitations – sent to potential participants by the two research assistants. REB members and organizations overseeing or supporting research (n = 17) were also approached to see if some of their employees would consider participating. While it was relatively easy to recruit REB members and research ethics experts, our team received a high number of non-responses to emails (n = 175) and some refusals (n = 5), especially by researchers. The reasons given by those who replied were threefold: (a) fear of being easily identified should they take part in the research, (b) being overloaded and lacking time, and (c) the intrusive aspect of certain questions (i.e., “Have you experienced a burnout episode? If so, have you been followed up medically or psychologically?”). In light of these difficulties and concerns, some questions in the socio-demographic questionnaire were removed or modified. Talking about burnout in research remains a taboo for many researchers, which paradoxically can only contribute to the unresolved problem of unhealthy research environments.

Returning to the research question and objective

The question that prompted this research was: What are the ethical issues in research? The purpose of the study was to describe these issues from the perspective of researchers (from different disciplines), research ethics board (REB) members, and research ethics experts. The previous section provided a detailed portrait of the ethical issues experienced by different research stakeholders: these issues are numerous, diverse and were recounted by a range of stakeholders.

The results of the study are generally consistent with the literature. For example, as in our study, the literature discusses the lack of research integrity on the part of some researchers (Al-Hidabi et al., 2018 ; Swazey et al., 1993 ), the numerous conflicts of interest experienced in research (Williams-Jones et al., 2013 ), the issues of recruiting and obtaining the free and informed consent of research participants (Provencher et al., 2014 ; Keogh & Daly, 2009 ), the sometimes difficult relations between researchers and REBs (Drolet & Girard, 2020 ), the epistemological issues experienced in research (Drolet & Ruest, accepted; Sieber 2004 ), as well as the harmful academic context in which researchers evolve, insofar as this is linked to a culture of performance, an overload of work in a context of accountability (Berg & Seeber, 2016 ; FQPPU; 2019 ) that is conducive to ethical distress and even burnout.

If the results of the study are generally in line with those of previous publications on the subject, our findings also bring new elements to the discussion while complementing those already documented. In particular, our results highlight the role of systemic injustices – be they social, distributive or epistemic – within the environments in which research is carried out, at least in Canada. To summarize, the results of our study point to the fact that the relationships between researchers and research participants are likely still to raise worrying ethical issues, despite widely accepted research ethics norms and institutionalized review processes. Further, the context in which research is carried out is not only conducive to breaches of ethical norms and instances of misbehaviour or misconduct, but also likely to be significantly detrimental to the health and well-being of researchers, as well as research assistants. Another element that our research also highlighted is the instrumentalization and even exploitation of students and research assistants, which is another important and worrying social injustice given the inevitable power imbalances between students and researchers.

Moreover, in a context in which ethical issues are often discussed from a micro perspective, our study helps shed light on both the micro- and macro-level ethical dimensions of research (Bronfenbrenner, 1979 ; Glaser 1994 ). However, given that ethical issues in research are not only diverse, but also and above all complex, a broader perspective that encompasses the interplay between the micro and macro dimensions can enable a better understanding of these issues and thereby support the identification of the multiple factors that may be at their origin. Triangulating the perspectives of researchers with those of REB members and research ethics experts enabled us to bring these elements to light, and thus to step back from and critique the way that research is currently conducted. To this end, attention to socio-political elements such as the performance culture in academia or how research funds are distributed, and according to what explicit and implicit criteria, can contribute to identifying the sources of the ethical issues described above.

Contemporary culture characterized by the social acceleration

The German sociologist and philosopher Rosa (2010) argues that late modernity – that is, the period between the 1980s and today – is characterized by a phenomenon of social acceleration that causes various forms of alienation in our relationship to time, space, actions, things, others and ourselves. Rosa distinguishes three types of acceleration: technical acceleration , the acceleration of social changes and the acceleration of the rhythm of life . According to Rosa, social acceleration is the main problem of late modernity, in that the invisible social norm of doing more and faster to supposedly save time operates unchallenged at all levels of individual and collective life, as well as organizational and social life. Although we all, researchers and non-researchers alike, perceive this unspoken pressure to be ever more productive, the process of social acceleration as a new invisible social norm is our blind spot, a kind of tyrant over which we have little control. This conceptualization of the contemporary culture can help us to understand the context in which research is conducted (like other professional practices). To this end, Berg & Seeber ( 2016 ) invite faculty researchers to slow down in order to better reflect and, in the process, take care of their health and their relationships with their colleagues and students. Many women professors encourage their fellow researchers, especially young women researchers, to learn to “say No” in order to protect their mental and physical health and to remain in their academic careers (Allaire & Descheneux, 2022 ). These authors also remind us of the relevance of Kahneman’s ( 2012 ) work which demonstrates that it takes time to think analytically, thoroughly, and logically. Conversely, thinking quickly exposes humans to cognitive and implicit biases that then lead to errors in thinking (e.g., in the analysis of one’s own research data or in the evaluation of grant applications or student curriculum vitae). The phenomenon of social acceleration, which pushes the researcher to think faster and faster, is likely to lead to unethical bad science that can potentially harm humankind. In sum, Rosa’s invitation to contemporary critical theorists to seriously consider the problem of social acceleration is particularly insightful to better understand the ethical issues of research. It provides a lens through which to view the toxic context in which research is conducted today, and one that was shared by the participants in our study.

Clark & Sousa ( 2022 ) note, it is important that other criteria than the volume of researchers’ contributions be valued in research, notably quality. Ultimately, it is the value of the knowledge produced and its influence on the concrete lives of humans and other living beings that matters, not the quantity of publications. An interesting articulation of this view in research governance is seen in a change in practice by Australia’s national health research funder: they now restrict researchers to listing on their curriculum vitae only the top ten publications from the past ten years (rather than all of their publications), in order to evaluate the quality of contributions rather than their quantity. To create environments conducive to the development of quality research, it is important to challenge the phenomenon of social acceleration, which insidiously imposes a quantitative normativity that is both alienating and detrimental to the quality and ethical conduct of research. Based on our experience, we observe that the social norm of acceleration actively disfavours the conduct of empirical research on ethics in research. The fact is that researchers are so busy that it is almost impossible for them to find time to participate in such studies. Further, operating in highly competitive environments, while trying to respect the values and ethical principles of research, creates ethical paradoxes for members of the research community. According to Malherbe ( 1999 ), an ethical paradox is a situation where an individual is confronted by contradictory injunctions (i.e., do more, faster, and better). And eventually, ethical paradoxes lead individuals to situations of distress and burnout, or even to ethical failures (i.e., misbehaviour or misconduct) in the face of the impossibility of responding to contradictory injunctions.

Strengths and Limitations of the study

The triangulation of perceptions and experiences of different actors involved in research is a strength of our study. While there are many studies on the experiences of researchers, rarely are members of REBs and experts in research ethics given the space to discuss their views of what are ethical issues. Giving each of these stakeholders a voice and comparing their different points of view helped shed a different and complementary light on the ethical issues that occur in research. That said, it would have been helpful to also give more space to issues experienced by students or research assistants, as the relationships between researchers and research assistants are at times very worrying, as noted by a participant, and much work still needs to be done to eliminate the exploitative situations that seem to prevail in certain research settings. In addition, no Indigenous or gender diverse researchers participated in the study. Given the ethical issues and systemic injustices that many people from these groups face in Canada (Drolet & Goulet, 2018 ; Nicole & Drolet, in press ), research that gives voice to these researchers would be relevant and contribute to knowledge development, and hopefully also to change in research culture.

Further, although most of the ethical issues discussed in this article may be transferable to the realities experienced by researchers in other countries, the epistemic injustice reported by Francophone researchers who persist in doing research in French in Canada – which is an officially bilingual country but in practice is predominantly English – is likely specific to the Canadian reality. In addition, and as mentioned above, recruitment proved exceedingly difficult, particularly amongst researchers. Despite this difficulty, we obtained data saturation for all but two themes – i.e., exploitation of students and ethical issues of research that uses animals. It follows that further empirical research is needed to improve our understanding of these specific issues, as they may diverge to some extent from those documented here and will likely vary across countries and academic research contexts.

Conclusions

This study, which gave voice to researchers, REB members, and ethics experts, reveals that the ethical issues in research are related to several problematic elements as power imbalances and authority relations. Researchers and research assistants are subject to external pressures that give rise to integrity issues, among others ethical issues. Moreover, the current context of social acceleration influences the definition of the performance indicators valued in academic institutions and has led their members to face several ethical issues, including social, distributive, and epistemic injustices, at different steps of the research process. In this study, ten categories of ethical issues were identified, described and illustrated: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. The triangulation of the perspectives of different members (i.e., researchers from different disciplines, REB members, research ethics experts, and one research assistant) involved in the research process made it possible to lift the veil on some of these ethical issues. Further, it enabled the identification of additional ethical issues, especially systemic injustices experienced in research. To our knowledge, this is the first time that these injustices (social, distributive, and epistemic injustices) have been clearly identified.

Finally, this study brought to the fore several problematic elements that are important to address if the research community is to develop and implement the solutions needed to resolve the diverse and transversal ethical issues that arise in research institutions. A good starting point is the rejection of the corollary norms of “publish or perish” and “do more, faster, and better” and their replacement with “publish quality instead of quantity”, which necessarily entails “do less, slower, and better”. It is also important to pay more attention to the systemic injustices within which researchers work, because these have the potential to significantly harm the academic careers of many researchers, including women researchers, early career researchers, and those belonging to racialized groups as well as the health, well-being, and respect of students and research participants.

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Acknowledgements

The team warmly thanks the participants who took part in the research and who made this study possible. Marie-Josée Drolet thanks the five research assistants who participated in the data collection and analysis: Julie-Claude Leblanc, Élie Beauchemin, Pénéloppe Bernier, Louis-Pierre Côté, and Eugénie Rose-Derouin, all students at the Université du Québec à Trois-Rivières (UQTR), two of whom were active in the writing of this article. MJ Drolet and Bryn Williams-Jones also acknowledge the financial contribution of the Social Sciences and Humanities Research Council of Canada (SSHRC), which supported this research through a grant. We would also like to thank the reviewers of this article who helped us improve it, especially by clarifying and refining our ideas.

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Drolet, MJ., Rose-Derouin, E., Leblanc, JC. et al. Ethical Issues in Research: Perceptions of Researchers, Research Ethics Board Members and Research Ethics Experts. J Acad Ethics 21 , 269–292 (2023). https://doi.org/10.1007/s10805-022-09455-3

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Reflections on the NeurIPS 2023 Ethics Review Process

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By the NeurIPS 2023 Ethics Review Co-Chairs

The NeurIPS 2023 Ethic Review process began with the publication of the Code of Ethics . This step formally codified a foundation for ethics within the conference framework.

The Ethics Guidelines for Reviewers were also updated to reflect incorporation of the Code of Ethics . 

This year, 502 papers (3.77% of all submissions) were flagged for ethics review. This represents an increase in the number of papers flagged last year (474) but a decrease in the overall rate of papers being flagged (from 4.37% in 2022).

In particular, we are heartened that fewer submissions in the Datasets and Benchmarks track were flagged for ethics review, despite the number of submissions more than doubling since last year. We believe that these trends mean that the ethics of ML research is being taken more seriously by the research community.

This year, reviewers in the main track were required to flag at least one specific area for ethics review. Note that papers can be flagged for multiple areas, so the percentages below do not add up to 100%.

Notably, discrimination, bias and fairness concerns have been flagged at nearly triple the rate this year compared to last year; the rate of papers flagged for legal compliance or responsible research practice also doubled.  

This year, we invited everyone contacted for ethics reviews from last year to serve again as ethics reviewers, and also issued an open call for new reviewers . A total of 396 ethics reviewers answered the call.

In addition, we also asked reviewers if they were available as emergency ethics reviewers , to provide missing reviews and reviews for papers flagged for review on short notice. 76 people volunteered as emergency ethics reviewers. 

We are immensely grateful to everyone who answered the call to service, which allowed us to handle the increased workload for ethics reviews, while broadening the community and reducing the average number of reviews per reviewer.

Thank you all for a wonderful and successful ethical review process.

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• http://orcid.org/0000-0003-3868-5765 Joanne Hunt 1 ,
• http://orcid.org/0000-0002-0205-1165 Charlotte Blease 1 , 2
• 1 Department of Women's and Children's Health , Uppsala University , Uppsala , Sweden
• 2 Digital Psychiatry, Department of Psychiatry, Beth Israel Deaconess Medical Center , Harvard Medical School , Boston , Massachusetts , USA
• Correspondence to Joanne Hunt, Department of Women's and Children's Health, Uppsala University, Uppsala 751 05, Sweden; joanne.hunt{at}uu.se

People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as ‘strategies of exclusion’. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy.

• Disabled Persons
• Quality of Health Care

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https://doi.org/10.1136/jme-2023-109837

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Introduction

People with disabilities have been described as an ‘unrecognized health disparity population’. 1 Health disparity (or health inequity) is understood as an avoidable and unjust difference in health or healthcare outcomes experienced by social, geographical or demographic groups with a history of socioeconomic, political or cultural discrimination and exclusion. 1 2 Despite the passage of landmark disability legislation, including the UK Equality Act 2010, the US Americans with Disabilities Act 1990 and the United Nations Convention on the Rights of Persons with Disabilities (adopted in 2006), disability-related health and healthcare disparities persist. Disabled people report lower levels of well-being on average compared with non-disabled people, are at increased risk of physical and mental comorbidity and are more likely to die younger. 1–3 There are multiple reasons as to why health disparities persist along the lines of disability; however, prejudicial biases, engendering structural barriers to care, play a critical part. For example, recently, the WHO 2 reported that people with disabilities are significantly more likely to perceive discrimination and stigma in healthcare contexts compared with non-disabled people. This is supported by a wealth of literature from across the world revealing institutional, physical and attitudinal healthcare barriers for disabled people, including medical professionals’ ambivalence or lack of understanding towards disability, lack of confidence vis-à-vis providing quality care and physically inaccessible clinics and clinical equipment. 4–7

Health and healthcare-related disparities also intersect with broader social disparities. For example, people with disabilities are less likely to be employed and earn less when they are in work, despite the fact that disability incurs higher living costs. 2 In the UK, government data from 2021 reveal a disability employment gap of 28%, 8 with a disability pay gap of 14%. 9 Recent figures from the US Bureau of Labor Statistics 10 indicate that the unemployment rate among disabled people is over twice the rate for non-disabled people, with similar trends across other countries. 2 Perhaps unsurprisingly, disabled people are also more likely to live in poverty than their non-disabled counterparts. 2 11 Compounding matters is structural disablism: discrimination and stigma (woven into collective attitudes, organisational policies, legislation and infrastructure) that often go unnoticed by non-disabled people but can take a serious toll on individuals living with disabilities. In 2023, the UK’s Office for National Statistics reported that the suicide rate was higher among people with disabilities than any other demographic group. 12

To better understand and address such disparities, carefully focused research is needed. 2 In this regard, people with lived experience of chronic illness and disability can offer unique insights that can strengthen and help drive richer research, where disabled people are positioned equally as co-researchers, as opposed to the traditional dynamic of disabled ‘research subject’ to be passively studied. Through first-hand experience, via experiential or standpoint epistemology, 13 disabled researchers are often well positioned to understand how health-related policies and practices (informed through largely non-disabled research communities) may unwittingly harm or otherwise disadvantage disabled persons. 14 Researchers with disabilities may also be more motivated and well placed to perceive knowledge gaps, and to pose penetrating and uncomfortable questions necessary to galvanise change. Embracing viewpoint diversity, and the input of disabled researchers, could therefore represent a powerful pathway to improve understanding and to develop more inclusive health and healthcare policy and practice.

The history of the disabled people’s movement within the UK, 15–17 whereby disabled scholar-activists entered the academy and contributed to profound changes in social practice and policy, constitutes an exemplar of the potential value of viewpoint diversity and disability standpoint, the legacy of which continues today, most notably within disability studies, but also more widely within critical social sciences and humanities. 18–20 However, within health sciences—particularly those tightly tied to science, technology, engineering and mathematics (STEM)—there appear to be greater barriers to including disabled scholars and integrating disabled knowledges. 21–23 For example, research shows that the percentage of people with a declared disability is lower in STEM subjects relative to non-STEM subjects at first degree, postgraduate level and within the academic workforce. 22 Moreover, a 2020 data analysis brief from the UK All-Party Parliamentary Group on Diversity and Inclusion in STEM 23 reported that the UK STEM workforce had a lower representation of disabled people relative to the rest of the UK workforce (11% vs 14%). Here, it is noteworthy that the analysis used the wider definition of STEM, that of ‘STEM(H)’ which specifically includes health and related fields. 23 Such exclusions are further compounded by intersectionality, the intersection and co-constitution of multiple forms of social (dis)advantage. 24 Indeed, the intersection of disability with other minoritised identities 19 21 23 is yet another reason to promote disability inclusion within the academy and beyond.

Despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author (hereafter, ‘JH’) who has struggled for over 3 years to find an accessible PhD programme in the UK as a person with ‘energy limiting conditions’ (ELC) 25 26 who is largely confined to the home. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, in particular those with ELC, by situating this in the legal context in the UK, and by detailing the nature of barriers experienced. Third, we offer recommendations for overcoming these barriers in the academy.

A note on nomenclature: we recognise that person-first language (‘people with disabilities’) is the globally prevalent form. 18 As a self-identifying disabled person broadly ascribing to the British social model of disability, 16 17 JH tends towards identity-first language (‘disabled people’). Therefore, while recognising the semantic and ideological divergences embedded within different forms of disability-related language, 18 we have chosen to adopt both forms in this paper to reflect our case for viewpoint diversity.

Additionally, while recognising the heterogeneity of disability and disability-related exclusions, 19 we focus on ELC: health conditions that share energy impairment as a key experience and substrate of disability discrimination or disablism.

ELC include but are not limited to ‘medically unexplained’ or contested conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, alongside ‘rare’ conditions such as Ehlers-Danlos syndromes. 25 26 Since ELC do not conform to socially prevalent (fixed, non-fluctuating, easily identifiable) stereotypes of disability, disablism largely manifests as clinical and social disbelief, resulting in ELC being poorly recognised and poorly researched through the lens of disability rights and diversity, equity and inclusion (DEI). 25 26 Equally, while we focus on exclusions within the academic space, it is important to note that people with ELC (and wider disabled communities) are subject to marginalisation and exclusion in all social arenas, including education, employment and the healthcare system itself. 25–28 Moreover, measures to improve physical inclusion (such as wheelchair-accessible environments) are oftentimes ineffective or insufficient among people with ELC who are confined to the home, thus furthering marginalisation of this group. In this respect, we recognise that people diagnosed with mental health conditions (notably but not limited to agoraphobia or social anxiety) may be confined to the home and are subject to similar dynamics of disability-related disbelief and associated exclusions as evidenced in the ELC arena. 29–31 Therefore, while we focus on ELC, the following discussion and recommendations for academic inclusion may benefit others with ‘hidden’ or poorly recognised health conditions.

The importance of ELC-specific research is arguably amplified by the emergence of long COVID, another condition that sits well within the ELC umbrella. 26 The concept of ELC arose from research led by disabled people within and outside of the UK academy 25 26 and thus represents an example of the potential value of ‘disability standpoint’ in contributing to health and healthcare-related research gaps. Nevertheless, there is very little peer-reviewed academic literature explicitly focusing on ELC (for recent exceptions see ref 32–34 ). To our knowledge, and motivating this paper, there is no research exploring academic exclusions in the ELC arena through a lens of epistemic injustice.

Epistemic injustice

Epistemic injustice refers to a variety of wrongs perpetrated against individuals in their capacity as a knower or contributor to knowledge. According to philosopher Miranda Fricker, 35 it takes two forms: testimonial injustice and hermeneutic injustice. The former arises when an individual is unfairly discriminated against with respect to their capacity to know or contribute to knowledge. This form of injustice often arises because of negative stereotypes about a demographic group. For example, in the case of disability, testimonial injustice may take the form of global, unjustified prejudices about the intellectual or bodily capacity of disabled individuals to contribute to knowledge. Disabled people may, for example, be seen as lacking the stamina, strength, reliability or acuity to offer useful insights. Philosophers of medicine Ian Kidd and Havi Carel 36 sum it up as a ‘pre-emptive derogation of the epistemic credibility and capacities of ill persons’ that involves ‘a prior view, for instance, of ill persons being confused, incapable or incompetent, that distorts an evaluation of their actual epistemic performance’. Testimonial injustice can take the form of implicit or explicit discrimination on the part of the hearer, leading to an outright dismissal or discrediting of the contribution of individuals to discussions in which they might otherwise offer valuable insights.

As others have argued, many people with disabilities may have acquired valuable knowledge about their condition through lived experience that renders them experts on aspects of their illness, the nature of health services and the quality of provider care. 27 37 38 Notwithstanding, it is also important to clarify that living with an illness need not automatically afford epistemic privilege. Rather, the point is that a finer awareness is needed to move past unhelpful stereotyping, to appreciate the contributions to knowledge that individuals may make. This, with a view to avoiding global or unwarranted assumptions about the credibility of individuals’ contributions to knowledge formation activities.

Hermeneutic injustice represents a wrong which Fricker describes as the set of structural and social problems that arise because ‘both speaker and hearer are labouring with the same inadequate tools’. 35 This form of injustice arises when individuals are precluded from accessing, or can only partially access, resources that could improve understanding about their experiences. Because of this asymmetry, those with unequal access to resources can suffer additional disadvantages that serve to further undermine their status and impede understanding about their condition. Kidd and Carel describe two kinds of means—which they dub ‘strategies’—by which hermeneutic injustice can be explicitly or implicitly perpetuated. 39 The first includes a range of structural barriers to participation in practices whereby knowledge is formed. Kidd and Carel argue that these can encompass physical barriers and subtler exclusions such as employing specific terminologies and conventions that serve to exclude the participation of disadvantaged people who might otherwise usefully contribute to knowledge. 39 A related, second strategy of exclusion, they argue, is the downgrading of certain forms of expression (such as first-person experiences, affective styles of presentation or vernacular) as evidence of the diminished credibility of the marginalised group. This demotion, Kidd and Carel contend, serves to further frustrate the efforts of the disadvantaged individual to participate, compounding ‘epistemic disenfranchisement’. 39 In this way, hermeneutic injustice can lead to a vicious, self-perpetuating cycle of testimonial injustice.

In what follows, we focus primarily on evidence of hermeneutic injustice, including strategies of exclusion among disabled researchers with ELC, who are largely or completely confined to the home and who seek to contribute to knowledge formation activities within the UK academy. Before we delve into the evidence, however, we offer some contextual caveats. First, it is important to offer some legal context with respect to disability rights. On the most charitable analysis, we acknowledge that not every individual who is disabled can expect to participate in every research context. For example, some barriers—such as the design or location of laboratories—might preclude full participation among some disabled researchers even with significant adaptations. Our aim then is to examine forms of epistemic injustice that pertain to ‘reasonable adjustments’, a legal term that we will unpack. Since our focus is on barriers to people with disabilities in British universities, we focus on UK legislation; however, what we have to say doubtlessly applies to other countries and regions.

Evidence of epistemic injustice among disabled researchers

Background on uk disability legislation.

Under Section 20 of the UK Equality Act 2010, higher education providers in England, Scotland and Wales are legally bound to provide ‘reasonable adjustments’ for people with disabilities who require them. 40 Section 6 of the Act defines disability as the experience of an impairment that has a ‘substantial’, long-term adverse impact on a person’s ability to engage in daily activities. Section 20 clarifies that the duty to make reasonable adjustments exists where any provisions or criteria offered or required by education providers place disabled people at a ‘substantial’ disadvantage relative to non-disabled people. 40

Health scholars have identified vagueness and therefore ambiguities in how qualifiers such as ‘substantial’ and ‘reasonable’ are interpreted. 41 Moreover, it has been contended that ‘reasonable adjustments’ rely on a non-disabled and potentially ableist perspective of what is reasonable, while also placing the burden to prove eligibility for adjustments onto disabled people, thus individualising the structural problem of normalised discrimination. 42 As previously outlined, ELC are poorly recognised as forms of disability, and research demonstrates that people living with diagnoses that can be positioned as ELC struggle to gain the recognition necessary to obtain reasonable adjustments. 32–34 43 Section 19 of the Equality Act 2010 explains that indirect discrimination occurs when one party applies a provision, criterion or practice that puts a person with a protected characteristic (such as disability) at a substantial disadvantage when compared with people without that protected characteristic. 40 44

The Equality Act allows for scenarios where discrimination may be justified (known as ‘objective justification’) in cases where providers can demonstrate that their policies or provisions constitute ‘a proportionate means of achieving a legitimate aim’. 40 Among the considerations about what might constitute a proportionate means are the size of the organisation, the practicalities and costs involved. 44 However, these are seldom explicitly articulated as a justification for the status quo, and the resulting ambiguities (which ultimately can only be resolved by tribunal or court) mean—as we will next find out—that disability discrimination may inadvertently become normalised.

Evidence of strategies of exclusion

Despite an ostensible increase in DEI policies within the academy, 45 46 there exists considerable literature demonstrating experiences of physical and attitudinal barriers to participation in academic research among disabled students and academics, including those with diagnoses that sit within the ELC umbrella. 29 31–34 43 46 There is also evidence that disability-related inequities in higher education persist in terms of degree completion, degree attainment and progression onto skilled employment or postgraduate study, within and beyond STEM. 21 22 47 48 The experience of JH is that such disparities are deeply entwined with physical and attitudinal barriers to full epistemic participation within the academy. Drawing on research findings and situating these against the lived experience of JH, we now explore evidence of strategies of exclusion for disabled researchers that, we argue, could contribute to epistemic injustice.

Studies that reveal barriers to academic participation, among people with ELC and disabled people more broadly, focus on two principal scenarios: (1) experiences of higher education students who can attend ‘on campus’ but require accommodations, 29 33 43 and (2) experiences of academics (from PhD study level upwards) navigating workplace barriers pertaining to reasonable adjustments, employment and career progression opportunities. 31 34 46 49 Where these barriers occur, we suggest they point to evidence of hermeneutical injustice that may also be underpinned by testimonial injustice. Indeed, chief among themes across such literature is that of ableism, understood as ‘a cultural imaginary and social order centred around the idealised able-bodied and -minded citizen who is self-sufficient, self-governing and autonomous’ 50 ; this ‘social order’ is founded on global prejudices about disabled bodies and minds. 50 Reports of academic ableism are evidenced as manifesting through, inter alia, a lack of accessible buildings and equipment, institutional inability or unwillingness to facilitate disability-related accommodations, and lack of familiarity (or consensus) among faculty and non-academic staff as to what constitutes disability-specific DEI practice and policy. 31 43 45 46 Additionally, increasing literature probes the creeping neoliberalisation of academia, which is contended to intersect with and perpetuate ableism, most notably though institutional normalisation of competition and hyperproductivity as a reflection of ‘excellence’. 31 46 Relatedly, and notably among students or academics with health conditions that can be positioned as ELC, the question of whether or how to disclose disability and implications of (non)disclosure is receiving critical attention. 21 29 31 33 34 43

Furthermore, as previously outlined, scarce attention has been paid to ELC explicitly, especially among people with ELC who are largely or completely confined to the home, yet may wish to continue within or enter academic spaces and thus require remote access. JH’s experience is that some of these people are not only marginalised within the academy but may be excluded from accessing it altogether. This, it would appear, is owing to a failure of institutions to facilitate remote access programmes. Here again, to understand how strategies of exclusion operate, we must turn to legal considerations. In terms of what might be considered ‘reasonable’, the willingness of research institutes to extend remote access to students and faculty during successive lockdowns owing to the SARS-CoV-2 pandemic 31 51 52 suggests that failure to extend such accommodations to disabled people who depend on them, and especially where research can be conducted from home, would be difficult to justify.

Yet, such remote access tends to be considered at best an ‘adjustment’ to preferred or ‘normal’ (non-disabled) practice, and provision appears to be patchy and poorly signposted; lack of clarity over which research institutes offer remote delivery programmes may thus constitute the initial hurdle. Some universities appear to offer remote PhDs within some disciplines but not within others, and the exclusions do not appear to be related to pragmatics such as requiring laboratory access. For example, according to JH’s enquiries, and information received, one UK research institute and member of the Russell Group (representing UK leading research-intensive institutions) offered distance learning PhD programmes in 2021 and 2022 within psychology, but not within sociology. For added context, JH’s research interests are interdisciplinary but primarily straddle disability studies (typically sited within academic schools of sociology and faculties of social sciences) and psychology. This is with a view to researching disability-affirmative, socioculturally and politically cognisant approaches to psychotherapy practice and policy. However, in academic fora, psychology and psychotherapy (often aligned with health sciences faculties) foreground heavily medicalised understandings of disability, and JH’s experience has been that psychology departments have not been open minded or welcoming vis-à-vis the prospect of integrating sociocultural and political perspectives, as per disability studies. In practice, this has meant that JH’s endeavours to find an accessible PhD have been limited to the purview of sociology. These disciplinary exclusions arguably represent the legacy of the reluctance of psychology, wider health sciences and life sciences to embrace disability in all its diversity. 21–23 50

In response to an enquiry as to why the above institution did not offer remote access PhDs in disability studies/sociology, the postgraduate admissions team informed JH: ‘All our PhD students undertake mandatory units which are only delivered in person’ (email, 10 February 2022). It is unclear how these mandatory units differ from units offered on remote access programmes. Indeed, a recurring motif throughout JH’s enquiries across various UK institutions is that further probing about potentially exclusionary policies results in ambiguous responses, or no response at all. Reasons for lack of remote access offered by other institutions included a mandatory requirement for direct (on-campus) contact with the PhD supervisor or the need to participate in onboarding sessions face to face on campus. However, lack of justification about why this was necessary was not offered.

Again, it might be expected that institutional willingness to provide remote access during lockdowns would serve as a precedent for remote access to become the norm rather than the exception. 46 However, in response to JH challenging lack of remote access provision on these grounds, the reply from the admissions team at another Russell Group university was as follows:

While during the last year some teaching and supervision has taken place online this is a temporary measure and not part of a formal distance learning course. Some supervision and teaching is also now taking place back on campus in person again. All ‘on campus’ programmes are subject to government mandated attendance requirements. (email, 28 January 2022)

When JH requested more details regarding these government-mandated attendance requirements, the admissions team declared that the enquiry would be passed onto another point of contact. Over 2 years later, no further details have been forthcoming. Ad hoc adjustments pertaining to remote delivery might be possible at some institutions, but it seems conceivable that these may be dependent on the supervisor’s individual preferences rather than policy, perhaps permitting prejudicial judgements about disability to interfere with decision-making.

Furthermore, for those fortunate enough to find a supervisor willing to ‘accommodate’ them, additional strategies of exclusion arise pertaining to funding via doctoral training programme (DTP) and research council consortiums. For example, a representative of the UK White Rose social sciences DTP 53 (covering seven UK higher education institutions in Northern England) informed JH that, in accordance with Economic and Social Research Council (ESRC) policy, disabled students confined to the home are not eligible to be considered for funding. Further digging revealed that this policy is not limited to the White Rose DTP; for example, the UK Midlands Graduate School DTP, 54 covering a further eight UK higher education institutions, lists the same exclusion criteria on its website at time of writing. When JH challenged the White Rose DTP’s policy on grounds of (dis)ableism, a representative forwarded the following response from the ESRC:

UKRI [UK Research and Innovation, non-departmental body of the UK government responsible for funding research] terms and conditions confirm that UKRI funded students must live within a reasonable travel time of their Research Organisation (RO) or collaborative organisation to ensure that they are able to maintain regular contact with their department and their supervisor. This should also ensure that the student receives the full support, mentoring, access to a broad range of training and skill development activities available at their RO, as well as access to the resources and facilities required to complete their research successfully and to a high standard. Our expectation also reflects that we want to avoid students studying in isolation […] (email, 15 December 2022)

In light of the considerable evidence that scholars across many disciplines can work remotely, the assumption that disabled people cannot research to a ‘high standard’ while confined to the home is problematic. Additionally, the reasoning around avoiding isolation, while likely well intended, does not hold much weight from JH’s standpoint. Many disabled people frequently experience significant physical and emotional isolation through navigating a (dis)ableist society and develop numerous strategies (including use of remote access technology) to mitigate this; in this respect, they may even be considered ‘experts by experience’ in resiliently striving to manage isolation. 51 55 56 Social media, for example, is used by many disabled people to connect with others, share ideas on managing health conditions and disability discrimination and develop collective advocacy and activism initiatives. 55 Refusing to offer remote access on (partial) grounds that disabled people may not be able to cope with the ensuing isolation risks infantilising people with disabilities, and withholds one of the very tools that can facilitate inclusion and thus counter isolation.

Moreover, literature suggests that being on campus does not necessarily prevent disabled people from experiencing or overcoming isolation, notably emotional isolation or alienation arising from lack of accommodations and thus feeling ‘unwelcome’ or ‘less than’. 33 46 The ESRC’s reasoning would therefore appear to arise from a non-disabled perspective (or at least, a perspective not attuned to certain facets of disability culture). Funding-related barriers are aggravated by the general lack of other funding opportunities for disabled students. For example, while scholarships for other under-represented groups are justly offered across many institutions, 57–59 often with emphasis on recruiting traditionally marginalised candidates, similar much-needed initiatives for people disadvantaged through disability are conspicuously absent. This is particularly important to address since disability and economic disadvantage are entwined in a complex manner, 2 11 and because, as previously noted, disability is intersected with other forms of social (dis)advantage. 19 21 24 28

It is worth emphasising that the exclusionary practices pertaining to health-related research, as discussed here, may be more pervasive and entrenched than we have presented. Discussing the impact of academic ableism, Brown 46 notes that disability disclosure rates, though on the increase in undergraduate admissions, drop between undergraduate and academic employment level. Brown identifies two factors that might explain this: (a) disabled academics may avoid disclosure for fear that declaring disability would impede their career, and (b) disabled students may simply drop out of the academy. As the foregoing demonstrates, JH’s experience suggests that the second factor may be entwined with disabled students being excluded from the academy because they cannot meet ‘on campus’ attendance requirements. It is currently unknown how many fledgling academics with disabilities have been excluded from the academy owing to discriminatory policies and academic culture, but it seems likely that JH’s case is not exceptional. Recent research recounts that some disabled faculty are being refused remote working arrangements as lockdown accommodations begin to revert to ‘normal’ practice. 60 For disabled researchers in perpetual lockdown, such refusals might result in experiences such as those detailed here remaining unknown and thus unaddressed.

In summary, where a ‘leaky pipeline’ exists vis-à-vis academic representation of some historically oppressed groups, 61 62 it appears that there exists no pipeline at all for a subgroup of disabled people who cannot leave their homes due to a combination of body/mind restrictions and lack of social provisions such as healthcare. Yet, disadvantages created by refusing remote access accommodations to scholars with disabilities who are confined to the home are certainly substantial. Beyond the potential loss to collective wisdom, the hermeneutical injustice perpetuated by barriers to education and employment among disabled people results in what Kidd and Carel describe as a ‘double injury’, 39 since it leads to significant ramifications for the psychosocial well-being and financial security of those excluded.

Conclusions and recommendations

Despite an ostensible increase in commitment to DEI policy and practice, the academy is far from an inclusive space for disabled people. In the case of disabled people who are unable to leave the home, we might better speak of outright exclusions as opposed to marginalisation. The above discussion has demonstrated that various strategies of exclusion operate within the academy that serve to exclude some people with disabilities ‘from the practices and places where social meanings are made and legitimated’. 39 Such exclusions risk further marginalising an already hermeneutically marginalised group, with concomitant psychosocial, occupational and financial harms. Additionally, these exclusions incur a loss of collective wisdom that adversely impacts the development of inclusive, safe and effective healthcare practice and policy.

Although we urge the importance of universities facilitating remote access to disabled scholars, we add a note of caution. First, a remote access academy should be offered in complementarity with, as opposed to an alternative to, ensuring accessibility of academic buildings and equipment, or to otherwise supporting disabled people to attend on campus. This is especially important since we also acknowledge that remote access is not a solution for all disabled people. 52 63 Of note, while remote access can be understood as an assistive technology that helps support the health, well-being and social inclusion of people with disabilities, 2 the digital divide means that disabled people are also less likely to be able to access this technology compared with their non-disabled counterparts. Such marginalisation is owing to lack of devices, broadband connectivity or reduced digital literacy, underpinned by financial, social and educational disparities as already discussed. 1 2 63 Our promotion of remote access as an inclusivity tool does not negate the need to address this divide. Nevertheless, recent research has shown that a leading UK online education provider (University of Derby) has three times as many disabled students as the national average, 30 suggesting that remote delivery of academic programmes can be a significant facilitator of DEI. We therefore conclude by offering recommendations with a view to building on such strategies of inclusion.

Given the lack of familiarity vis-à-vis disability-specific DEI practice and policy, as reported in literature 31 45 46 and as experienced by JH, our first recommendation is for formalised disability equality training and education initiatives that specifically take account of people with ELC and those confined to the home. Since report of such training reinforcing disability-related stereotyping exists, 31 there should be greater emphasis on co-producing such resources with people with disabilities, including those confined to the home who are often excluded from public policy-making. Such initiatives, which could also beneficially target personnel involved in research councils and DTPs, should address implicit personal and organisational biases, facilitate understanding of how current policy and practices perpetuate (dis)ableism and promote a proactive approach to equity and inclusion, specifically in the case of people confined to the home. Disabled researchers and disability studies scholars have argued that an institutional culture change is necessary to move beyond a perfunctory engagement in, or basic legal compliance with, DEI initiatives; a foregrounding of the social model of disability and universal design principles has thus been proposed in developing DEI policy and practice. 29 31 46 The social model upends academically prevalent (individualistic) representations of disability and reasonable adjustments, by placing the onus for change on social structures and institutions as opposed to the people who are discriminated against. 16 17 In the case of ELC, we suggest that the social structures requiring greatest change to facilitate inclusion are attitudinal contexts, most notably disbelief. 24 25 In complement to the social model, application of universal design tenets to academic contexts, which involve building ‘accommodations’ into academic standard and managing disability-related diversity proactively as opposed to reactively, 29 31 46 should be extended to remote access. In practice, this means reducing the likelihood that disabled people have to ask and prove eligibility for reasonable adjustments. 42

Second, we recommend greater institutional transparency, including clear guidance for researchers with disabilities, vis-à-vis remote working policies. For many research and study programmes, online library access, supervision and other meetings represent acceptable accommodations, if not candidates for integration into academic standard as a complement to on-campus delivery. Such accommodations should be clearly signposted and, where remote working is not possible or government mandates apply, both transparency and strong justifications are required. In this regard, an institution outside of the UK has set a precedent. Uppsala University in Sweden has welcomed JH as research affiliate in the Department of Women’s and Children’s Health, operating entirely via remote access. This approach, which embraces remote working as if it were standard practice (as per universal design principles), is invaluable in challenging the prevalent yet exclusionary academic notion of dominant (on-campus) practice and policy as ‘normal’ and ‘ability neutral’. It thus serves as an exemplar for disability-related best practice for UK institutions.

Third, the current funding system requires considerable revision to better include people with disabilities who are confined to the home. In cases where research projects can be conducted remotely, there is surely no justification for exempting this group of disabled people from being eligible to apply for grants and PhD stipends. As per our above recommendations for remote accommodations, information on funding eligibility should be easily accessible, with strong and transparent rationale for any exclusions. Additionally, existing initiatives to ring-fence funding for researchers from minoritised groups to study health-related inequities 64 should be extended to include disabled people. Without such measures, much-needed research might never be conducted. This article, which has arisen from disability standpoint, and both disability and academic allyship, has indicated a considerable research gap pertaining to how disabled students or academics confined to the home experience barriers to health-related research. With a view to addressing this research gap with the added value of disability standpoint, funding opportunities must facilitate the inclusion of disabled researchers. Yet, while some under-represented groups are supported through funding-related DEI schemes, 64 disability is often overlooked.

Finally, we recommend a more formalised and universally applied academic DEI monitoring and ombudsman scheme, both to assess DEI-related shortcomings and to support minoritised researchers in raising concerns. Disabled scholars have suggested using Disability Standard (a form of benchmarking used in business to assess inclusivity and accessibility) to analyse gaps in disability-related DEI practice and policy 31 ; practical application across UK universities appears very limited. Existing schemes to promote DEI within the education sector should ensure that disability, including disabled people confined to the home, is represented and consider how institutional compliance can be secured. ‘Advance HE’ is a UK non-governmental body that promotes excellence in higher education, an objective the body acknowledges as entwined with DEI. 65 While DEI ‘international charters’ pertaining to gender and race exist with a view to encouraging providers to commit to inclusion of under-represented groups, 65 an equivalent charter specifically for disability does not exist. Here again, we recognise that different forms of discrimination intersect and that race and gender shape disability. 2 21 28 Moreover, while we do not mean to overlook recent efforts among Advance HE and other bodies to include disability in DEI initiatives, 66 the voluntary nature of many of these initiatives (which ‘encourage’ higher education institutions to address more fully disability-related DEI) will likely allow the inequitable status quo to persist. Seeking to ground a collective institutional commitment to disability inclusion within legislation, or at the very least within a transparent ‘award’ system as with DEI initiatives pertaining to other under-represented groups, 65 would likely lend more gravitas to such schemes and ‘nudge’ research institutes towards greater accountability.

In summary, insights from scholars with disabilities can help to inform more inclusive, safe and effective health-related interventions, with further benefits for social inclusion. Current academic structures deny opportunities to the very people who are well placed to identify and research the most overlooked problems in our health systems. If we truly prize DEI, the academy must become more accessible to disabled people.

Ethics statements

Patient consent for publication.

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JH and CB contributed equally.

Contributors Both authors contributed equally to all aspects of the paper. As corresponding author, JH acts as guarantor.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

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