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Abstract

Dissatisfaction with the prevailing systems of research ethics governance has been voiced for decades, so changing research ethics management practice is not a new idea. In fact, in some quarters, often far from Euro-Western universities and health authorities, positive change has already taken place. We discuss eight systematically selected case studies, and Indigenous research ethics, as examples of alternative frameworks. These are all value-based, and we suggest that eight of the key values found therein could inform a purpose-built research ethics management system. The eight key values are: respect, honesty, justice, care, accountability, fairness, diversity and reflection. We argue that research ethics committees and institutional review boards should be at the vanguard of normalising justice-oriented considerations and reciprocal ways of working in research, and reframing research ethics as a proactive and supportive relational process rather than a reactive and instrumental transactional event. Values are not static, they change as contexts change, and research ethics management needs to be agile and flexible to recognise and work with these changes. Also, the values of people being researched should carry equal weight to the values of those governing and doing research. We see three reasons for hope: recognition that reforms are needed, the changes which have already taken place, and the fact that those changes have laid a pathway to wider reforms. The answers to the questions of how to reform research ethics management to make it fit for purpose are already here, simply waiting to be scaled up.

Keywords

ethics research ethics research ethics governance research ethics management values

Introduction

Euro-Western research ethics governance evolved in a piecemeal way in response to diverse external drivers (Israel, 2015). Even so, there is a level of consistency in how this is managed. In institutions where research ethics approval is mandatory for at least some studies, research ethics governance is generally implemented through committees. These are known as research ethics committees (RECs) in the UK and elsewhere, and institutional review boards (IRBs) in the US and they frequently operate as bureaucratic research ‘gatekeepers’ (Iphofen, 2009; Kara, 2018; Tolich and Marlowe, 2017). Dissatisfaction with these processes has resounded through the literature for decades (see, e.g. Hammett et al., 2022; van den Hoonaard and Hamilton, 2016; Wynn, 2017). This is primarily because conventional Euro-Western research ethics approval is a reactive and instrumental transactional event. We argue for research ethics approval to become a proactive and supportive relational process. To achieve this, we advocate for learning from innovations in review which are happening outside universities and health authorities. This article outlines some examples of that learning, draws out key findings and makes suggestions for how RECs and IRBs in universities and health authorities could make positive changes to the ways in which they work.

At present, there is a fragmented and diverse approach to research ethics management, where some researchers are subject to high levels of transactional bureaucracy in the name of ‘ethics’, some receive support to help them work ethically, and some receive no ethical scrutiny or support at all (Kara, 2018). This last includes research conducted by many independent researchers, market researchers, researchers in voluntary, commercial and other organisations who do not have access to RECs/IRBs, and others.

Examples of unethical research are regularly used in the teaching of Euro-Western research ethics. They are familiar and well-rehearsed: the Nazi concentration camp experimenter Dr Mengele, the American covert syphilis experiments on poor black men in Tuskegee, the psychologist Milgram who studied obedience using a distressing method where participants were tricked into believing that they were delivering painful electric shocks to other people, and so on. The responses they are taught about are also familiar: the Nuremberg Code, the Helsinki Declaration, the Oviedo Convention, the Belmont Report and so on. This approach conveys the strong impression that unethical research and their correctives occurred in the past and are a problem solved, with research ethics management systems in place to ensure such atrocities could not happen today. Any student of human history would be unsurprised to learn that different atrocities are happening instead, such as ethics dumping, the retention of human remains, silencing in the name of paternalistic ‘protection’ and wider malpractice. These points are discussed in more detail below.

Ethics dumping is a term coined by the European Commission in the 2010s. It refers to research practices regarded as unethical in most Euro-Western countries being carried out in countries in the global South where ethical regulation is weak or non-existent (Teixeira da Silva, 2022). Forms of this are also visible in researchers choosing to work in communities that don’t have their own IRBs so as to avoid ethical requirements and scrutiny from those communities (CBPR, 2012). The retention of human remains as ‘data’ is a problem when universities and other institutions in the US and Europe hold millions of such items which belong to Indigenous or colonised peoples. Legislation was passed in the USA in 1990 to make this illegal there, but many universities are still not compliant (Dunbar-Ortiz, 2014).

There are many examples of RECs/IRBs silencing researchers and participants in the name of protection of both participants and researchers. Most do not make their way into the literature, although there is recent coverage of:

requested modifications by RECs resulting in in poor treatment of participants (e.g. Pickering, 2018)

exclusion of so-called ‘vulnerable groups’ from larger studies (e.g. Bishop et al., 2024)

researchers having to change where they undertake research and thus with whom (e.g. Andersson, 2016)

subjecting women scholars to additional scrutiny in the name of safety (Bandula-Irwin, 2024), and even

withdrawing whole projects when changes required by RECs conflict with and undermine ethical strategies co-designed by insider researchers with potential participants (e.g. Aldridge, 2024; see also Schroeder et al., 2024).

The latest revisions to the Declaration of Helsinki require REC members who can ‘effectively evaluate each type of research [the REC] reviews’ (WMA, 2024), which would help to mitigate against this kind of harm. However, there is also evidence that this paternalistic model can silence members of the very committees that are tasked with managing research ethics (de Vries and Henley, 2014).

Wider malpractice is evident from the database of Retraction Watch, an internet resource created by Ivan Oransky and Adam Marcus, US doctors, in 2010. This contains information about ethical misconduct leading to retraction of journal articles. Ethical misconduct identified by Retraction Watch includes the manipulation and fabrication of data and findings (Balyakina, 2022).

Operating a review system oriented towards preventing the recurrence of past ethical breaches does not go far enough. We need a system that prevents current and future ethical breaches. We argue that attending to the ethical review processes created by communities who are often researched, but rarely direct research themselves, presents opportunities for change for researchers and RECs/IRBs in universities and health authorities.

We position universities and health authorities as ‘central institutions’, partly because most RECs/IRBs are situated in universities and health care organisations (Taylor, 2023), and partly in recognition of the power held and wielded by these institutions. We offer four pairs of cases where ethics is being done differently outside these institutions: in communities, small organisations, at national level and at multi-jurisdictional regional level. We also consider the enormous amount of work being done on research ethics by Indigenous peoples worldwide (e.g. AIATSIS, 2020; Te Ara Tika (Hudson et al., 2010); Drugge, 2016; South African San Institute, 2017). We explore how all the work described in these case examples is underpinned by a set of values and a commitment to ongoing reflection and improvement. We further attend to the human and resource costs of having to develop alternative ethical management systems, and identify achievable ways in which RECs/IRBs and individual researchers in central institutions can begin to work towards review processes that more closely align with – and thus are more likely to meet the needs of – those with whom we conduct research.

Cases

We present the following examples of good practice, including eight cases and a discussion of Indigenous peoples’ work on research ethics. Then we go on to discuss the common themes and threads that could help to inform incremental or wholesale reform of ethical review processes in central organisations.

Our eight cases are in four pairs and are drawn from around the world. They are:

Community-based: San people (southern Africa) and Waverley Care (Scotland)

Small organisations: Social Research Association (SRA; UK and Ireland) and the National Council for Voluntary Organisations (NCVO; England)

National: New Zealand’s Aotearoa Research Ethics Committee (AREC) and the UK’s Independent Research Ethics Committee (IREC)

Regional: European Union and its Research Executive Agency (REA) and Canada and its Tri-Council Policy Statement

First we briefly describe each case and its salient features, values and principles. Then we consider what these cases, collectively, can tell us about how research ethics is – and could be – managed.

Community-based ethical review: The San Code of Research Ethics and Waverley Care

An increasing number of communities, some highly marginalised, are developing ethical guidelines and even ethical review processes, for researchers who want to work with them. This is often driven by a desire to shape the kind of research that is being done about them, often towards research with them and for them (Friesen et al., 2021; Heikkilä, 2021; Mi’kmaw Ethics Watch, 1999; Six Nations Council, 2014). We introduce two examples: the San Code of Ethics from Southern Africa, and Waverley Care in Scotland.

In 2017 the first set of ethical guidelines developed by and for Indigenous Africans was published (Callaway, 2017). The San Code of Research Ethics identified four core principles. These were:

respect (including respect for culture and the landscape),

honesty (including clear, non-patronising use of language, and honesty about the limits of what research can achieve),

justice and fairness (including identifying and ensuring community benefit, and co-research and skills development), and

care (including accepting San people as they are and extending care beyond participants to family members).

These values of respect, honesty, justice and fairness and care emerged as a response to a history of extractive research relations where ‘San leaders [became] increasingly convinced that most academic research on their communities has been neither requested, nor useful, nor protected in any meaningful way’ (Schroeder et al., 2019: 73).

The San Code emerged out of earlier work aimed at bringing together leaders from geographically disparate San communities across southern Africa in 1996. This led to the creation of a common Media and Research Contract in 1998 for articulating and asserting boundaries with outsiders wishing to take San knowledge. In 2017, further NGO support enabled San leaders to come together again to develop this into a Code of Ethics (‘the Code’). The Code was intended to function less as a contract for data collection and more as a tool for ensuring collaboration with San communities from the outset of any research project about San lives.

The Code was developed with significant institutional support from a range of governmental and non-governmental organisations (see Schroeder et al., 2019 for details). We have not been able to find information about the implementation of the Code since it was published. As Schroeder and colleagues note, the complexity of bringing together geographically diverse leaders to develop and refine a framework requires financial and logistical support. Supporting communities to remain aware of the Code, and their rights to shape and even refuse research within it, requires on-going support. It is thus significant that this trail-blazing, value-driven Code emerged and yet appears not to have developed further, potentially due to lack of resources.

By contrast, Waverley Care is a UK-based organisation that has developed their own ethical review process for researchers who want to work with them. This review process exists independently of researchers’ institutional requirements, such as university review, but has been put in place, like the San Code, to ensure that the values of the organisation are reflected in the work undertaken with and about their service users.

Waverley Care is the national HIV and Hepatitis C charity for Scotland. Like the San, Waverley Care service users were extensively researched, and Waverley Care were receiving regular requests from researchers for access to their service users. Some researchers promised to share findings but few did. Like the San and like other organisations working with marginalised groups, Waverley Care found relationships with researchers to be frequently extractive and one-sided. They wanted to take steps to ensure that they and their service users would be treated ethically by researchers. In 2019 a senior staff member contacted Helen Kara to ask for help in setting up a REC for external research to achieve this goal.

In 2019 Waverley Care convened a group of staff, volunteers, service users and representatives of partner agencies – including the health authority and a university – to decide on their priorities and define key principles. The key principles were:

participant involvement,

need,

accountability,

mutual benefit,

confidentiality, and

anonymity.

REC documentation was drafted in early 2020, but then these plans were put on hold by the COVID-19 pandemic. At the time of writing, the plans remain in hiatus, but the organisation expects to revive them in due course.

This process of creating a small-scale REC began from identifying values that were both reactive to past, extractive experience and proactively framing the kinds of research the organisation wanted to support. These values amplified ‘standard’ principles of confidentiality and anonymity of particular salience to this population, while emphasising participant involvement and benefits to address and offset risks of extractive relations.

Both the San people and Waverley Care have histories of extractive relationships with researchers. Both wanted this to change, and to be able to set – or at least influence – research agendas about them. Both required institutional financial and organisational support to make this happen. Both have been fortunate in this occurring, although as the San example reveals, initial investment may have limited long-term impact without on-going investment. Moving from creating a Code to instituting systems of review requires yet more resources which are not equally available to all communities.

Ethical review in small organisations: NCVO and the SRA

As communities develop ethical guidelines and introduce review processes, they do so under conditions of constraints, where the costs of maintaining ethical review to meet the needs of that community can be prohibitively high (Friesen et al., 2021). Small organisations such as the National Council for Voluntary Organisations (NCVO) in England, and the UK- and Ireland-wide Social Research Association (SRA), have expanded their remit in response to the needs of their members and resource capacities.

NCVO is a not-for-profit membership organisation supporting 17,000 charities in England, most of which are small voluntary organisations and community groups. They undertake their own research, and conduct research and evaluations for other organisations. In 2022 NCVO began work on setting up an internal REC, with mentoring assistance from Helen Kara, to support research and evaluation work undertaken by NCVO, and the REC was launched in March 2023. Although researchers within NCVO complete an application form, which is responded to by others within the organisation, this REC was not set up to provide approvals, but to review colleagues’ work with a view to sharing and reflecting on research practices to maintain and improve research quality within NCVO. This is done in accordance with NCVO’s ethical principles,¹ which are: beneficiaries first, integrity, openness and the right to be safe. When following these principles, NCVO advises their members to:

respect every individual’s dignity and rights to privacy and confidentiality

commit to challenging any instances of sexism, gender inequality and other power imbalances that leave some people at risk of harm, and

value and improve diversity in governing bodies, workforce and volunteers.

These principles were developed with input from NCVO’s member organisations of all sizes.²

In summer 2023 NCVO made a public statement about its REC, and unexpectedly began to receive enquiries from its member organisations about whether they too could use this internally-developed, reflection-oriented, values-driven approach to review and research improvement. This has since been piloted with one of the member organisations who had made an enquiry.

The SRA is another membership organisation, not for other organisations but for individual researchers; Helen Kara has been a member since 2006. It is a comparatively new learned society, founded in 1978 for the benefit of its members: individual social researchers. Like many learned societies (and NCVO), it is not-for-profit, and is constituted as a registered charity. Its object is ‘to advance the conduct, development and application of social research for the benefit of the public interest, and to advance knowledge and professional practice in this field’ (Social Research Association, 2007: 1). In 2003 the SRA published ethical guidelines which were highly regarded by research funders and others, and these were updated in 2021. Echoing the emphasis on reflection that characterises NCVO REC processes, the aim of these guidelines ‘is to encourage you to reflect carefully at all stages of the research process’ (Social Research Association, 2021: 1). From these guidelines developed an online ethics forum, where members can consult peers on complex ethics-related questions; Helen Kara consulted the forum in 2008, and has been a member of the forum since 2012. In 2022 the SRA launched a paid-for ‘ethics appraisal service’ which offers a panel of experts to provide ethical appraisal for researchers who have no access to a REC. The SRA make clear that this service is explicitly not itself a REC, because it does not formally ‘approve’ research proposals, but rather provides feedback for reflection and improving research. Its aims are:

To enhance the ethical awareness and conduct of the clients concerning the research and its potential consequences,

To advise on measures to protect all stakeholders (e.g. individuals participating in and associated with a research project, and researchers themselves) from undue risk of harm or violation of their rights, and

To increase awareness of the potential benefits and risks of research.³

Both organisations have experienced an expansion in the remit of what they do in relation to ethics. In both cases, the form this has taken has followed the lead and the needs of their members. Unlike the Codes of Ethics discussed below, these have not involved a conscious creation and articulation of a set of values, but evolved responsively over time. Both organisations have developed some form of ‘review’ and REC or equivalent, but have consciously chosen not to prioritise approval, instead focusing on sharing, reflection and working together towards good research practice. Both have the resources to respond to this shift in the needs of their members for reflexive, non-approval-based review.

National independent RECs: AREC and IREC

A further development in recent years has been the emergence of national independent research ethics committees. AREC and IREC are two such RECs, both set up in response to perceived gaps in existing ethical review, based in New Zealand and the UK respectively.

AREC was founded in 2008 as the New Zealand Ethics Committee. It was set up to be independent of any existing institutions and not for profit. Committee members include current and former academics and researchers as well as community members. AREC aims to provide independent ethical review of community research conducted in Aotearoa New Zealand, in order to safeguard the rights and wellbeing of researchers and participants⁴ within a specific cultural and ethical framework. It does this through ensuring strong representation from the Indigenous Māori people of New Zealand⁵ and being guided in its work by four core Māori values⁶:

Tika – what is the right thing to do?,

Kaitiaki – providing guardianship to all involved in research and to the ethics of research,

Manaaki – to cherish, conserve, and sustain underpinned by an emphasis on reciprocal care and respect, and

Whakarongo/vei rogorogoci – respectful listening, and incorporating and engaging with diverse voices.

AREC was set up as a deliberately ‘powerless’ (Tolich and Marlowe, 2017) REC explicitly situated in Indigenous (in this case Māori) values and offering its services at no cost for researchers excluded from formal ethical review. It centred its review processes on interaction between committee and applicants, rather than gatekeeping. AREC wanted to work with and for researchers in ways that model how they would like researchers to treat participants.⁷

Very quickly demand outstripped capacity as funders compelled researchers to make use of this resource, even though it was run by unpaid volunteers. Also, other researchers without access to institutional RECs, such as market researchers, began utilising AREC to secure ethical review. AREC then asked those who had submitted an application in 2015 why they had done so, to better understand who was using it and why, and how to develop in the light of unexpected uptake and its core values (Tolich and Marlowe, 2017). This is a committee which is driven and guided by a set of values, and which engages in on-going research and reflection into itself to understand and maintain those values in the face of unexpectedly expanded demand.

IREC was founded by Helen Kara and colleagues in the UK in 2023 to ‘provide full ethical review for proposed research projects’.⁸ This was in response to an increasing awareness of institutional ethical review often being understood by RECs and applicants alike as a box-ticking compliance exercise, limited to considerations of participant wellbeing and data management, essentially to protect institutions from being sued by disgruntled participants rather than to help researchers work more ethically. IREC was inspired by AREC and motivated by the desire to push ethical review beyond data collection-focused box-ticking to a ‘nose-to-tail’ approach to ethics. The attention to the ethics of analysis IREC have within this is driven in part by the work of Retraction Watch⁹ which shows that analysis is a key site where ethical misconduct occurs in researchers’ work.

The committee is available to anyone who wishes to receive feedback on the ethics of their proposed project as a whole. There is a sliding scale of fees, designed to increase accessibility for users and enable payment of panel members. This latter is a point of difference from AREC, who explicitly drew on volunteer reviewers to begin with, but for IREC it is based on the ethical value of recognising the work – and care – involved in providing practical, useful feedback.

Like AREC, IREC is undergirded by principles, albeit less explicitly culturally-shaped ones. These are:

intersectionality,

justice,

dignity,

respect,

fairness,

honesty, and

care.

IREC too understands ethical ‘review’ as a dialogic process, with applicants invited to seek clarification and further discussion where necessary. A pool of ethics experts was recruited in mid-2024 and IREC became operational in October 2024. As a new REC, it is committed to undertaking regular reviews of its values and processes to ensure it meets the needs of its users.

These committees share in common a strong and explicit values-based approach. This comprises both the stated values of what counts as ‘ethical’ research, and also values in terms of the process of ethical review. In both cases this is that review is available to people without access to institutional RECs; that reviews are framed through explicitly articulated (and themselves periodically reviewed) values, and; that review encompasses the whole of a research project, from the initial research question to aftercare for participants, communities, data and findings (Kara, 2018).

Multi-jurisdictional regional ethical frameworks: Canada and the European Union

Bottom-up research ethical codes and oversight have enabled communities and institutions working with often-marginalised groups to impress their values on research projects. This is made difficult by ethics dumping, the expectation that review work is undertaken without recompense and institutional RECs/IRBs overriding communities’ values and ethical requests (CBPR, 2012). Attempts have been made to draw together ethical guidelines and review systems across multi-jurisdictional regions into a set of framing values and practices. We turn now to the Tri-Council Policy Statement in Canada, and efforts within the European Union to provide a cross-cultural, pan-European ethical framework.

Canada is the second largest country in the world, formed of 10 provinces and three territories. It has three federal research councils focusing on health research, natural sciences and engineering research and social science and humanities research. In 1998 these councils collectively produced a Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS; Israel, 2015).

The TCPS was originally produced in reaction to academic atrocities and dishonesty (Israel, 2015). It was published in the same year as the OCAP® principles of ownership, control, access to and possession of data, developed by First Nations, Inuit and Métis leaders to ‘promote common strategies across nations and communities for collecting and analyzing data relevant to Aboriginal development goals’¹⁰ (see also Kukutai and Taylor, 2016).

TCPS is updated regularly, with a stated commitment to be ‘current and responsive to the ethical issues that arise in the course of research involving humans’ (TCPS2: 2). The 2022 version of the TCPS (TCPS2) runs to 288 pages, with detailed chapters covering the consent process, fairness and equity in research participation, privacy and confidentiality, governance of research ethics review, conflicts of interest, multi-jurisdictional research, research involving the First Nations, Inuit and Métis peoples of Canada, qualitative research, clinical trials, human biological materials and human genetic research. These chapter topics have remained consistent through the 2014 and 2018 revisions, and perhaps before that too.

TCPS2 is based on three core complementary and interdependent principles:

respect for persons,

concern for welfare, and

justice (TCPS2: 6).

Applying these value-based principles is intended to help maintain a balance between protecting participants and ‘serving the legitimate requirements of research’ (TCPS2: 10). TCPS2 further asserts that applying the principles will ‘maintain free, informed, and ongoing consent throughout the research process. . . lead to sharing the benefits of the research. . . [and] help to build and maintain the trust of participants and the public in the research process’ (TCPS2: 10).

This document represents an on-going effort to identify common research principles across multiple disciplines and take account of the research needs of Indigenous peoples in Canada. It is values-driven, and argues that common ethical values can cut across research of diverse disciplinary origins and Indigenous and settler communities. Its periodic revisions process enables it to reflect on its ongoing relevance and utility.

The European Union (EU) is a supranational body made up of 27 member states. Each member state has its own national, institutional and community research ethical guidelines and review processes. In 2011, the EC published its European Code of Conduct for Research Integrity. As with the TCPS this has been periodically revised, with new versions published in 2017 and 2023, both centred around the principles of reliability, honesty, respect and accountability (ALLEA, 2023). These four ‘good research principles’ cover:

Reliability in ensuring the quality of research, reflected in the design, methodology, analysis and use of resources.

Honesty in developing, undertaking, reviewing, reporting and communicating research in a transparent, fair, full and unbiased way.

Respect for colleagues, research participants, research subjects, society, ecosystems, cultural heritage and the environment.

Accountability for the research from idea to publication, for its management and organisation, for training, supervision and mentoring, and for its wider social impacts. (ALLEA, 2023: 5).

Both bodies have sought to develop ethical frameworks that apply across all research disciplines and approaches, a wide range of diverse communities, multiple languages and various social and political structures. They have both identified core principles or values to underpin ethical research across this diversity. Both have committed to periodically reflecting on and revising and updating their ethical principles and ethical guidance. For the EU, this has included investing significant sums in researching research ethics. Notably, TCPS2 has a chapter on working with Indigenous populations, and values that overlap with Indigenous research values developed within and beyond Canada (see below). By contrast, despite having multiple Indigenous populations within EU member states, there is no explicit discussion of Indigenous ethics within the European Code. Both Canada and the EU share a commitment to respect within research relations, while otherwise foregrounding quite contrasting values to one another.

This brief overview of developments in ethical review is necessarily selective. There are myriad other examples we could have focused on and some of these can be explored in the work of Israel (2015). However, we have tried to show that these eight cases illustrate that huge developments in ethical review are occurring away from institutional centres in recent years. Expanding numbers of communities and organisations who work with and/or represent those communities are setting up their own ethical guidelines, codes and review processes and discovering that this is costly work. This work is impressive and important. However, it seems unreasonable that so much of the work of protecting underserved people should fall to those communities themselves in order to ensure they are protected and respected by researchers operating within existing research governance systems. These are communities for whom the current ‘gold standard’ ethical review is not fit for purpose, and indeed may be actively harmful, as shown by the silencing practices of some RECs/IRBs outlined above. This contrasts with the work of individual scholars who seek out – and set up – autonomous, independent review processes that are explicitly situated within a values framework. It is significant that these values foreground respect, justice or care and make little mention of the kinds of concerns that seem to drive university RECs/IRBs (Peled-Raz et al., 2021; Pickering, 2018; van den Hoonaard, 2011). As we have shown, these concerns are more closely related to institutional protection than to supporting ethical research.

There are of course also developments more centrally. The latest revisions of the Declaration of Helsinki were published in October 2024. Some of these seem very overdue, such as the shift in terminology from ‘research subjects’ to ‘research participants’, which has long been called for by researchers (e.g. Boynton, 1998). Others seem much more forward-facing, including calls for RECs to ‘have the right to monitor, recommend changes to, withdraw approval for, and suspend ongoing research’ (WMA, 2024). The 2024 version also states that a REC ‘must have sufficient resources to fulfil its duties’ (WMA, 2024), though there is no suggestion about where these resources might come from.

We turn now to what can be learned from Indigenous research ethics.

Indigenous research ethics

We have seen one example of bottom-up ethics work by Indigenous people, that is, the San Code of research ethics and there are many others. Indigenous peoples are not homogeneous, yet Indigenous peoples’ approaches to ethics from around the world share a lot of commonalities. Many Indigenous peoples have been subject to displacement, cultural annihilation and extractive research. They have developed often very similar ethical codes, and the work of Indigenous peoples on research ethics is the largest force on Earth today pushing for reform of the current research ethics management systems.

Indigenous research ethics emerged in the late 20th century as a response to Indigenous rights activists pushing back against the seemingly ‘universal’ values, methods and methodologies of Euro-Western research ethics frameworks such as Nuremberg, Helsinki and Belmont. These frameworks did not account for Indigenous work on ethics, or for the role of academic research in colonial relations, frequently characterised by disregard, deception and extraction (Fournier et al., 2023; Kovach, 2021). As such, the frameworks did not prevent all potential harms and abuses to Indigenous peoples in the name of research (Smith, 2021). While we focus here on Indigenous rights activism, it should be noted that this emerged alongside social justice research movements in the global north and south, which similarly argued for research to be done with and for, rather than to or about marginalised communities and people (Harper and Pratt, 2022; Kara, 2018; Prior, 2007). This aligns with the ‘nothing about us without us’ movement in areas such as feminist, disability and queer research in the Euro-Western world.

In 1991 the Australian Health and Medical Research Council (NHMRC) worked with Aboriginal organisations to develop the NHMRC Guidelines on Ethical Matters in Aboriginal and Torres Strait Islands Health Research (Humphery, 2003). This document emphasised spirit and integrity, cultural continuity, equity, reciprocity, respect and responsibility. In 1996 the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) set up a REC and produced Guidelines for Ethical Research in Indigenous Studies in 2002. In 2006 AIATSIS became an affiliate of NHMRC (Grant, 2007). Regularly reviewed, the current AIATSIS Guidelines¹¹ are accompanied by guidance on how to apply the Guidelines in practice,¹² and emphasise various values, including: recognition and respect; engagement and collaboration; cultural capability and learning; Indigenous-led research; Indigenous perspectives and participation; Indigenous knowledge and data; benefit and reciprocity, and ongoing Indigenous governance.

In the US, in the same year NHMRC drafted their initial guidelines in Australia, Kirkness and Bamhardt developed the 4Rs of working with Native Americans and Alaskans: respect, relevance, reciprocity, responsibility (Kirkness and Barnhardt, 1991). This was subsequently expanded to include relationships (Wilson, 2008) or relationality (Carjuzaa and Fenimore-Smith, 2010) and later representation (Tsosie et al., 2022). In Canada, Hayward et al. (2021) synthesised the values underpinning First Nations, Métis and Inuit RECs/IRBs, guidelines and protocols, dating back to the 1998 OCAP® principles of ownership, control, access to and possession of data. This work also encompassed the wave of RECs/IRBs, guidelines and protocols developed by First Nations, Métis and Inuit communities since 2014. The key values all these had in common were: ensuring collective consent and collective ownership of Indigenous knowledge; incorporating cultural norms and values into how methods are chosen, implemented and results analysed; and the centrality of self-determination around research agendas and processes.

Synthesising across the uneven development of Indigenous research ethics in Oceania, Lovo et al. (2021) identified four key common pan-Oceanic values.¹³ These were:

Relationship building (requiring both time and gifting),

Recognition of culture and ontology and local leadership,

Informed consent as relational and communitarian (i.e. that individualised informed consent is inappropriate because an individual does not have the autonomous authority to give away shared cultural knowledge),

Safety, survival and protection.

Like Indigenous communities, Indigenous research ethics are not homogenous, and each of the above identifies specific cultural values that shape the research ethical values of that society or region. However, all of these societies have in common experiences of (past and present) colonial oppression and extraction, including extraction of culture, knowledge, and artefacts through research. Directly or indirectly, respect features in all their statements of underpinning values.

The Indigenous rights movement has been joined in more recent years by the decolonisation movement in Euro-Western academia, which has helped that sector begin to recognise the existence and value of ways of generating knowledge outside of Euro-Western methods and epistemologies. This advocating for valuing non-Euro-Western ways of doing knowledge is both central to some Indigenous ethics activism and to the ethical guidelines Indigenous populations have produced (e.g. AIATSIS, 2020; Te Ara Tika (Hudson et al., 2010); South African San Institute, 2017).

It is noteworthy that most of the communities which have succeeded in setting Indigenous ethics agendas have been minoritised groups in majority white, anglophone high-income countries. Not all Indigenous groups and societies have had equal success in reforming ethical review processes in line with local values. Thus high-income countries in Oceania (Australia, New Zealand) have well-developed Indigenous ethical guidelines adopted into national research ethics, while low- and middle-income Pacific Island nations (e.g. Tuvalu, Kiribati, Fiji, Tonga) lack the resources to develop or incorporate written, agreed-upon Indigenous research guidelines into research management, leaving them dependent on ‘international’ ethical frameworks and RECs/IRBs (Lovo et al., 2021). This has also played out in Lucy Pickering’s work of going through institutional and national ethical approvals in Uganda, Kenya and Sierra Leone: all required the provision of a detailed research protocol in which every detail is mapped out in advance, and it was noticeable that feedback tended to centre on objectivity, anonymity and other questions situated within biomedically-derived, individualist, Euro-Western epistemologies. This ‘epistemic colonisation’ (Ndlovu-Gatsheni, 2018: 4) is a thread that connects the kinds of questions research addresses, methods expected (and their lack of flexibility and responsiveness) and the processes by which gatekeeping bodies ‘review’ research.

Black majority African nations have very different histories and present experiences of colonisation from Indigenous groups in the white, anglophone world, and their health is often understood in global centres of research as ‘global health’ rather than ‘Indigenous health’ or ‘Aboriginal health’. Tellingly, Harper and Pratt (2022) note that in published Aboriginal health research ethics debates ‘colonisation is by far the most cited concern’ (2022: 445), and is linked to research processes, ownership of knowledge and benefit. By contrast, in global health research ethics debates ‘colonisation is considered to be past practice’, albeit one that has ‘left a legacy of ethical concerns and problems yet to be rectified’ (2022: 446). Once again, situating unethical relations as something located in the past potentially blinds ethical review processes to the ethical contexts of the present.

It is beyond the scope of this paper to unpack the (post)colonial domestic and international relations behind these differences. However, there remains much to learn from those who have advocated (albeit not always successfully) for alternative ethical frameworks that situate power, extraction, and benefit at their heart.

Over the last few decades there has evidently been a significant shift in Indigenous and global south groups developing and advocating for ethically-informed research shaped by local and cross-Indigenous group values. These have led to the development of ethical guidelines and local RECs/IRBs. However, the development of these guidelines and RECs/IRBs is not cost-free, placing a further burden of unpaid – and often unacknowledged – labour on Indigenous and global south communities (Harper and Pratt, 2022; Lovo et al., 2021).

There is a little evidence that some Euro-Western funders are beginning to shift their priorities to include relationship building, development and reciprocity. For example, the UK grant-making foundation Lankelly Chase recognised that its investment-based philanthropy was ‘so entangled with Colonial Capitalism that it inevitably continues the harms of the past into the present’.¹⁴ As a result, this funder decided to dismantle its own operations and transfer control of its £130m in assets, over a 5-year period, to – and, crucially, with the help of – community-based organisations and networks focusing on social justice. Some similar operations have taken, and are taking, place in the US (Butler, 2023). It is essential that RECs/IRBs in the powerful, agenda-defining global north reflect this and crucially lead on reforming so-called ‘universal’ and ‘international’ research ethics processes to meet researchers’ and marginalised and colonised communities’ needs for non-extractive, meaningfully consensual, relational research.

What might purpose-built research ethics management look like?

Our analysis has shown that there is an enormous opportunity for research ethics management in central institutions to learn from work being done in other arenas. Ensuring that ethical review for research addresses the ethical challenges of the present is at the forefront of these ethical guidelines and review processes. However, central institutions face different kinds of challenges from the organisations and movements discussed in this paper.

The form of ethical review within central institutions is shaped by a particular history. Just as our examples have emerged from a history of particular kinds of harms (around colonisation, wealth and knowledge extraction, perpetuation of inequalities, epistemic injustices etc), so ethical review in central institutions came out of a particular history of (often medical) atrocities. Current systems have evolved, often piecemeal, from systems that were long ago put in place to mitigate these harms, with medical templates exported to other disciplines, despite often being seen as not fit for that purpose (Bell and Wynn, 2023; Simpson, 2011; van den Hoonaard, 2024). This piecemeal and reactive development has left these systems not only unfit to respond to contemporary ethical challenges, but complex and costly to run (Page and Nyeboer, 2017; Sugarman et al., 2005).

Smaller bodies, away from the review churn of large institutions and unburdened by this complex history, have managed to pause, reflect, and build systems centred on identified values. This has been particularly achievable when setting up systems from scratch. However, this capacity to pause is a luxury not available to large organisations continuously processing large volumes of reviews. Any reform, however incremental, must take place alongside the day-to-day work of the REC/IRB.

Many central institutions have legal obligations under legislation such as European GDPR legislation that they must consider alongside research ethics. These are situated within entrenched relations of power in what Friesen et al. (2023: W5) call ‘the interconnected nature of the different components of the research ecosystem’ where particular discourses continue to set the agenda, despite innovative practice of the kind we have sought to highlight here occurring around the globe. Part of this ‘research ecosystem’ is an audit culture (Strathern, 2000) where these RECs/IRBs need to evidence that they are doing ethical review within frameworks set by funders, governments and others.

Revising ethical review in central institutions, then, requires recognition that individual RECs/IRBs exist within a research ecosystem which has expectations outside the control of those institutions. Also, while it is known that existing systems are costly, complex and inefficient, reform itself is costly when it must occur alongside the day-to-day reviewing work of committees. And reform must engage with both research ethics and research governance as well as align with national, regional and international legislative frameworks and requirements.

These challenges are significant, but not insurmountable. Ethically-motivated review of processes would incur up-front time and energy costs, but produce more responsive, more efficient and thus more cost-effective systems. Change is already underway within different parts of the research ecosystem which individual RECs/IRBs can draw on and amplify. We have found that the vast majority of research ethics practices outside central institutions have begun from values and built systems from there. Good practice already exists for central institutions to draw on, with papers on process published and experts to consult. Even the most thorough root-and-branch overhaul would not need to start from scratch or work in isolation.

Our contribution to this process is attending to the commonalities of these values, and offering them as a starting point for central (and other) institutions. Values necessarily vary in response to local cultures, customs and priorities. However the eight key values below recur around the world to provide a powerful starting point for central institutions who choose to undertake systems reform.

Respect. This is perhaps the most pervasive and widespread value. It is promoted by groups as diverse as NCVO, AREC and the TCPS, and by Indigenous researchers worldwide.

Honesty. This is linked with transparency and the mitigation of bias, as well as honesty about the limits of what research can achieve.

Justice. Promoting the rights of humans and sometimes also the environment, animals, cultures etc.

Care. Preventing harm, protecting where protection is needed, promoting welfare.

Accountability. Researchers taking responsibility for all our actions and inactions.

Fairness. This includes benefit-sharing with participants and communities.

Diversity. Recognition that listening to and including different voices enriches research. Collective working and consensus is privileged.

Reflection. Most values-based research ethics practices include a commitment to reflect on their values and practices, at regular intervals, to assess whether they are still fit for purpose or whether revisions are needed in the light of external changes.

How can we make these reforms happen?

We think there are roles here for central institutions, research funders and individual researchers. Central institutions could lead the way in ensuring research ethics management systems are transparent about the values that inform their processes and decisions, and have the periodic reviews necessary to ensuring they are addressing the key ethical challenges of the period. Instead, this is being led from the edges and the margins: the benefit of this (for those in central institutions, at least) is that templates of good practice already exist and simply need to be scaled up and adapted to meet the legal and governance requirements of central institutions. We have sought to show that even the work of identifying values does not need to begin from zero: we have identified eight recurring values from which such a process could begin.

Individual RECs/IRBs identifying their values can then help them see where their values align with those of other RECs/IRBs, even if routes to enacting them are different. Recognition of aligned values connected to alternative data collection and analysis methods could build respect for researched communities’ requirements and humility and openness into institutional REC/IRB processes, without risking compromises to rigour or accountability.

Dominant ethical harms do and will change over time. Central institutions could also be taking the lead in proactively identifying and working to mitigate current and imminent ethical harms. This would require RECs/IRBs to acknowledge the context within which their ways of doing knowledge and ethics are considered superior to those of communities being researched, as that is evidently one of the main drivers of some current harms (Chilisa, 2020; Ndlovu-Gatsheni, 2018). Attending to the discriminatory underpinnings of Euro-Western knowledge production is tough, essential work.

Individuals within central institutions also have a potential role in this process of reform. They could check for, and design studies within, codes of ethics developed by the communities with whom they seek to work, and seek ethical approval from relevant Indigenous/community RECs/IRBs where possible. Then they could advocate for the values and approaches of these communities to the institutional RECs/IRBs who will ultimately ‘approve’ their work and who need to respect and value local ethical processes, even if those are unfamiliar.

Individual researchers can also seek out external insight specifically focused on the ethics of their project as a whole from relevant bodies such as AREC, IREC and the SRA. Then they can feed this back to their institutional RECs/IRBs, thereby helping to create change from within.

Research funders could support this by factoring in the necessary costs into their budgeting practices. Funders could also mandate a values-based, ‘nose-to-tail’ ethical review process, thereby leveraging their considerable power to positive ends.

Investment in reform is not only an investment in bringing underpinning values to light and foregrounding ethical conduct in the context of current ethical harms, but also an investment in efficiency. Delays and frustrations in current processes can be identified and anticipated, and emerging emphasis on post-approval oversight designed in (Halwai and Vaswani, 2023; Page and Nyeboer, 2017). However, it is important to acknowledge that, as with our example cases, some central institutions have more resources available to them to undertake a project of this scale than others. It is beholden on those with sufficient resources to draw on existing good practice to create models of good practice that work at scale to facilitate even development within an unequal world.

Our review of developments in research ethics outside central institutions has shown a consistent foregrounding of research ethics over research governance. However, Indigenous ethical values driven by histories of extractive relations show how questions of how data is managed, by whom, who has access to that data and for what purpose are important ethical questions which extend the ethics of data management far beyond compliance with legislation or regulation (Kuhn et al., 2020). Thus central institutions need to carefully consider how governance intersects, not only with legal requirements, but also with their ethical values.

As the 2024 Helsinki revisions suggest, RECs/IRBs are well positioned to shift the gaze of ethical review beyond harm and benefit in data collection to how research projects are enacted as processes. Following the OCAP® principles, RECs/IRBs could ask: ‘In what ways are local researchers included in the design, data collection, analysis and dissemination of this project?’. This cannot be a simple inclusion = good/exclusion = bad binary that invites tokenism, but can be an invitation to reflect on barriers and facilitators to inclusion and development. This rests on reframing research ethics as a dialogue, where researchers are invited to reflect on their choices, the constraints on those choices and what they can do, no matter how seemingly small, as they design their study.

The case examples of RECs/IRBs in this article go even further. They are deliberately power-sharing and have built in ‘open dialogue between committee and applicants’ (Tolich and Marlowe, 2017: 49) as central to their process. Indigenous researchers have long understood consent as a dialogic process involving communities rather than a form-signing event between individuals (Chilisa, 2020; Shore et al., 2011), and this view is also now becoming more common in Euro-Western research (de Vries and Henley, 2014; Robinson et al., 2011). Those with the greatest power to push back against ‘international’ (i.e. Anglophone/Euro-Western) ‘gold standard’ (i.e. biomedically-derived) ethical review have the greatest responsibility to build on the values – but also the work already done – by others to build ethical review systems that foreground dialogue. attend to the process of ethical design, feedback and refinement and provide ongoing support for researchers, participants and communities.

How this can best be done varies with different contexts. AREC is heavily influenced by Māori ethics. If IREC had tried to replicate AREC’s approach on the other side of the world it would have failed to account for its own cultural context and the ethical implications of cultural appropriation. Conversely, one of the key values for IREC is intersectionality, which is regarded as an important concept in the US and Europe but, as Soldatic (2024) has highlighted, limits rather than expands analysis of disabled Australian Aboriginal people’s lives. It is also important to know that contexts shift and change, and what is and is not ethical also changes. This means that static checklist-based approaches to research ethics management are inadequate, and underlines the importance of reflexive practice (Conley and York, 2020), grounded in the values of those who are being researched, rather than only those researching them. Thus part of process-based ethical support for research is reflexivity about the values and context of the REC/IRB (or equivalent), and the society and culture within which it is situated, and an openness to change.

In broad terms, a goal could be to reframe ethical review as curiosity-driven dialogue about best ethical practice for that project. This could be based on exploring together the ethical values that drive the researchers, how they shape the research process from start to end, and whether and how the project is or will be situated in relations with one or more communities. These are ways of enacting respect that derive from locally situated examples and also fit within wider Euro-Western values and ethics. Steps towards this could include identifying current ethical challenges of import, identifying REC/IRB values and engaging with centres of aspirational REC/IRB practice about the facilitators and challenges of system change.

Researchers, too, must play their part. This can be done by meeting early on to define the value base for the research project and ensuring the work is embedded in relationships – including relationships with local researchers. Also researchers should familiarise themselves with local and relevant ethical guidelines (and, if they exist, local RECs/IRBs) and identify, and advocate for, their guiding values.

Conclusion

We have begun to identify what a model for a new approach to research ethics management could look like, inspired by ethical work already done by communities that are frequently researched yet rarely influence global or national research agendas. This model is explicitly values-driven and emphasises the importance of research ethics management being:

proactive rather than reactive,

relational rather than transactional,

supportive rather than instrumental,

aware of and working with, rather than ignoring or denying, pertinent contextual issues,

nose-to-tail rather than extractive (i.e. understanding data ‘collection’ as the only point where ethics apply),

cognisant of any ethical guidelines created by the community under study and radically centring them, and

a process rather than an event.

This invites attention to the wider contexts of research histories and researcher-community relationships beyond the lifespan of the project.

There are some limitations to our work. We are both only able to read academic and other professional work in English, so this article excludes relevant work which is reported in other languages – or not reported at all. We have each drawn on our own professional experiences, which has enabled some work that would not otherwise have been reported to be included here, but more could be done in future to systematically discover and report diverse professional experiences of review systems.

Our work, we think, provides three main reasons to be hopeful. First, there is growing recognition that current systems are creaking at the seams, not responsive to shifting harms, and unfit for purpose for many research communities. So reform is needed. Second, change is happening. Values-based codes and committees continue to come into being and some researchers are actively seeking them out. And third, the answers to the questions of how to reform research ethics management are already here, simply waiting to be scaled up.

We hope the evidence we have gathered and the model we have identified may inspire RECs/IRBs, research funders and individual researchers to explore how to do ethical review differently within – and ultimately beyond – current parameters.

Footnotes

Acknowledgements

We would like to thank Waverley Care, NCVO and SRA for permission to write about their work in this article. Also, we thank Philippa Wiseman for her insightful critique of an early version of the article. And we thank the anonymous reviewers of a later version for their invaluable help and support.

ORCID iD

Helen Kara

Ethical considerations

The authors declare that research ethics approval was not required for this study.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Notes

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How can we reform research ethics management to make it fit for purpose?

Abstract

Keywords

Introduction

Cases

Community-based ethical review: The San Code of Research Ethics and Waverley Care

Ethical review in small organisations: NCVO and the SRA

National independent RECs: AREC and IREC

Multi-jurisdictional regional ethical frameworks: Canada and the European Union

Indigenous research ethics

What might purpose-built research ethics management look like?

How can we make these reforms happen?

Conclusion

Footnotes

Acknowledgements

ORCID iD

Ethical considerations

Funding

Declaration of conflicting interests

Notes

References