Barriers to Equity,Diversity and Inclusion in Canadian Research Ethics Board membership: Challenges and opportunities for reform

Abstract

This article reflects upon the current state of Equity, Diversity and Inclusion (EDI) on Research Ethics Board (REB) membership in Canada. As post-secondary education institutions strive to increase EDI initiatives across all areas, diversity among the REB membership becomes increasingly critical. Increasing EDI on the REB is complex in the context of colonialism and a discipline that has historically mistreated those from equity-deserving groups. Many barriers to achieving diversity in academia exist that are also reflected in the REB membership. REBs lacking in diversity may struggle to conduct robust ethical reviews, and without full institutional support, increasing diversity in the membership remain a challenge. Diversity amongst community members adds another layer to this complexity with additional barriers such as lack of inclusive recruitment strategies and equitable compensation. Despite community members being central the mandate of the REB, they can be perceived as secondary to affiliated subject matter expert members. This perception de-values the work of the non-affiliated community member, creating conditions of tokenism and power imbalances. Given the unique standing of the REB within the research enterprise, it is well positioned to be a leader in the EDI space. Barriers identified are surmountable and with genuine effort, the REB can champion EDI. It will take full institutional support to enact change and disrupt barriers to EDI for the REB to reach an ideal state of authentic EDI in its membership and processes. Such endeavors can only act to strengthen the ethics review of research and increase research excellence throughout Canada.

Keywords

barrier Equity Diversity and Inclusion Research Ethics Board Research Ethics Board membership community members

Introduction

Academic research is a significant feature of higher education institutions, however, it has been historically conducted and administered by a narrow demographic (Canadian Association of University Teachers, 2018; Canada Research Coordinating Committee, Government of Canada, 2021), a situation reflected globally and not unique to Canada (Dewidar et al., 2022; Prince and Francis, 2023). Such limitations within research reduce innovation and research excellence, and perpetuate institutionalized inequalities (Side and Robbins, 2007).

Equity, Diversity and Inclusion (EDI) is a much-discussed topic in the field of research and in academia generally. The Canadian federal government and granting agencies are embedding EDI into all aspects of research funding and review, with the expectation that this will benefit research and public trust (Government of Canada; Dewidar et al., 2022). Integrating principles of EDI into the research ecosystem serves to increase institutional performance (greater research impact and innovation, attracting talent and funding) and competitiveness i.e. the business case of increasing EDI (Thomson and Gooberman-Hill, 2024), whilst addressing social justice in a wider societal context (Meloney et al., 2023; Thomson et al., 2024). Increasing EDI in research not only encompasses increasing EDI in the participants recruited for research or the researchers themselves, but the entire research enterprise, inclusive of administrative processes. How EDI is implemented at institutions and in research continues to be debated.

This article aims to explore the challenges of EDI on the Research Ethics Board (REB) and what barriers institutions are facing while securing diversity amongst their REB members in the current regulatory and policy framework. Understanding the many facets of EDI within the REB’s work and the complexities of diversity amongst community members is especially critical to determining how the REB can become an EDI champion.

Current policy landscape of EDI in Research Ethics Board membership

Research taking place at Canadian academic institutions in receipt of federal grant funds is required to have oversite of the ethical conduct of the research. The institution has the responsibility of establishing a Research Ethics Board (REB) or delegating to an external REB (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022). REBs are constituted of faculty and staff that review research proposals for ethical acceptability. REBs ensure research is compliant with the Tri-Agency Policy Statement: Ethical Conduct for Research Involving Humans (TCPS). This policy provides a framework for which the ethics review can take place. REBs are supported by staff and administrators and include subject matter experts as well as those with expertise in ethics, law and community representatives (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022). Approval granted by an REB must be in place prior to research initiation, typically along with other approvals.

The REB must be included in research institution’s efforts to reflect EDI values. Through its collective expertise, the REB deliberates on the ethical acceptability of the proposed research. However, REBs that are not diverse enough may miss salient ethical issues (Churchill et al., 2022) due to a lack of varied perspectives. Unconscious bias and microaggressions can act to underpin institutionalized racism, undermining the research enterprise (Canada Research Coordinating Committee, Government of Canada, 2021), which can include the role of the REB. An REB that reflects EDI values is a key measure to overcoming institutionalized racism present in scientific research (Jonker et al., 2021). Racialized minority faculty serving on REBs may benefit from career advancement whilst also contributing to a more balanced review of ethics applications for their racialized peers (Jonker et al., 2021). Despite membership of the REB being regulated by governmental agencies (Health Canada, 2023; U. S. Food and Drug Administration, 2023), it can be challenging to secure a membership that is diverse and inclusive. This is supported by research conducted in the U. S., which suggests Institutional Review Board (IRB) membership is somewhat lacking in diversity (Berry et al., 2019; Churchill et al., 2022). Comparable research, specifically data on EDI of REB members, does not appear to have been conducted in Canada.

The current policies that dictate REB membership focus on diversity of professional experience, intended to create a breadth of subject matter expertise that is in part necessary for the REB to discharge its duty. In Canada an REB must have at least five members: two members must have expertise in the subject matter the REB typically reviews (sometimes referred to as scientific members), one member who has expertise in ethics, one member who has expertise in law but is not the institution’s appointed legal counsel, and one member who is a community member with no affiliation to the institution (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022). This is the minimum requirement for membership of the REB, as indicated in the TCPS (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022). However, this policy does little to address the need for demographic diversity on the REB with the only mention being in the context of diversity of disciplines:

“The size of an REB may vary based on the diversity of disciplines, fields of research and methodologies to be covered by the REB, as well as on the needs of the institution. In appointing REB members, institutions should strive for appropriate diversity”.

The minimum standards of REB membership are intended to ensure that the appropriate subject matter background, expertise and perspectives are included during the ethics review. The above statement of striving for diversity implies that EDI characteristics of the REB are incorporated. But simply implying that EDI characteristics are incorporated is not enough to create meaningful action in this domain (Pizarro Milian and Wijesingha, 2023). This one statement in a policy governing REB composition is significantly lacking in the robustness necessary for substantive EDI requirements on the REB and in the broader context of research. It is important to note that diversity alone is insufficient to advance the equity and inclusion of minority groups (Byrd, 2022), factors pertaining to equity and inclusion are equally important. While efforts to increase diversity are commendable, without efforts to also increase equity and inclusion, the academic community will struggle to attain a meaningful community that is safe and welcoming to all. Additionally, regulations and policies governing REB composition in Canada do little to promote gender diversity, and do not go beyond the gender binary, citing the requirement for REBs to have “both men and women” (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022; Government of Canada).

The U. S. regulations governing IRB composition elaborate further concerning demographic diversity of REB members. When regularly reviewing research regulated by U. S. federal agencies involving vulnerable populations (elderly, children, incarcerated etc.,), IRBs should have within their membership those knowledgeable and experienced with working with such populations (U. S. Food and Drug Administration, 2023). This regulation applies to Canadian REBs reviewing research regulated by U. S. federal agencies.

Increasing EDI on REBs is a complex task that is impacted by a historical context of colonialism and racism. Despite many instances of institutional commitments to EDI and new policies, there remains a gap between policy and practice (Mohamed and Beagan, 2019). As institutions create “EDI Offices” designed to spearhead initiatives, concerns of “diversity washing,” the appearance of aligning with EDI values, can hinder any meaningful impact (Pizarro Milian and Wijesingha, 2023). The perception that such policies are inauthentic further limits their effectiveness (Bhopal and Pitkin, 2020). For example, work is being conducted that aims to improve research relations with Indigenous communities and other equity deserving groups. Despite this, much distrust remains, including a wide disconnect between western and Indigenous research practices (Bull et al., 2020), and a history of research harms with some equity deserving groups (Grenz, 2023).

Despite efforts to address this, structural racism and lack of diversity in academia is an ongoing challenge and Canadian policy does little to support REB membership that is reflective of EDI values.

Equity, Diversity and Inclusion in the REB membership

Much has been done to identify barriers to EDI in research and the academic space (Prince and Francis, 2023). Many of the barriers identified as larger systemic barriers in research institutions also apply to the REB. A lack of diversity in academia overall (Universities Canada, 2019) contributes to a lack of diversity in research infrastructure (Churchill et al., 2022; Dewidar et al., 2022). This non-diversity in academia perpetuates systemic colonialism and inequities (Mohamed and Beagan, 2019), of which the REB is no exception (Sabati, 2019). In the U.K., only 11% of senior faculty identify as belonging to an ethnic minority group (Prince and Francis, 2023), and levels of academic staff with a disability remain low in Australia, between 2% and 10% (Mellifont, 2020). In the U.S., those identifying as Black, Indigenous, People of Colour (BIPOC) serving on IRBs is low, between 3% and 6% (Jonker et al., 2021) and 91.5% of IRB chairs identify as being white (Berry et al., 2019). Less than 1% of IRB chairs and 1.7% of REB members identified as American Indian or Alaskan Native (Berry et al., 2019). The situation in Canada reflects this global underrepresentation with 3.3% of senior university leadership identifying as Indigenous and only 15% identify as belonging to a racialized group (Universities Canada, 2022). The lack of diversity in academia and in REB membership further reinforces the concept of research being conducted and administered by a narrow demographic. For example, faculty member-medical doctors make up a significant proportion of REB members serving on health focused REBs across the country. However, with EDI as a core value of medical school admissions processes, future doctors and thus future REB members will hopefully be as diverse as possible (Mateo and Williams, 2023). This lack of diversity in academia is further enabled by wage gaps between those identifying as equity deserving and those who do not, experienced the most by racialized women (Canadian Association of University Teachers, 2018; Prince and Francis, 2023).

Institutions must provide support for REBs to embrace EDI principles within the REB membership and review practices (Meloney et al., 2023). Institutions are required to provide adequate financial and administrative resources for their REBs (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022). Although research on funding of REBs is limited, anecdotally, many REBs experience a chronic state of underfunding and lack of resources. Despite many academic institutions closely examining their policies and practices to be more aligned with EDI values, direct support for REBs to achieve EDI goals may not be a priority, especially given the arms-length nature of the REB to the institution. Without intentional and targeted institutional support, recruiting and retaining diverse REB members will be challenging (Kaplan et al., 2018). With this context in mind, it can hardly be surprising that REBs both here and across the border are struggling to attain diversity among their members.

Specialized REBs exist that exclusively review research with certain populations or diseases such as behavior, children, Indigenous peoples, cancer etc., however, many institutional REBs review research for populations for which they may not have expertise. For example, research with LGBTQIA2S+ people (Tufford et al., 2012) or community-based research with Indigenous Peoples (Fournier et al., 2023). Fundamentally, the REB reviews the ethical acceptability of the research, but can it be considered morally acceptable to review research for which the REB possesses little to no expertise? Without direct expertise in the research topic, a robust ethics review will be problematic since gaps in understanding may only become apparent through further exploration of a topic. While an inadequate ethics review may be better than no ethics review, the REB will be challenged to review research with populations for which it does not have knowledge (Guta et al., 2010). Reliance on ad hoc advisors in such situations can alleviate this temporarily, however, this is not a sustainable solution (Meloney et al., 2023). Canadian REBs may use ad hoc advisors, however, the TCPS cautions against frequent use, suggesting that instead, the REB look to fill the gap in its membership (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022). This struggle of membership diversity is perpetuated by biased institutional policies and practices that make it challenging to recruit REB members who may hold such expertise. This is a reality for many researchers, and it is frustrating for both the researcher(s) and the REB.

Perhaps one of the biggest barriers for EDI on the REB roster is the time commitment required. Achieving diversity and inclusion without over burdening staff and faculty with heavy ethics review workloads is a difficult task. REBs must exercise caution that they are not being either tokenistic to give the appearance of EDI values, nor implementing an equity-tax of unfairly piling work onto a minority of members (Drolet et al., 2023). Faculty belonging to equity-deserving groups may experience pressure to contribute more to the academic community compared to their non-equity deserving counterparts, thereby reducing time spent advancing their own careers (Gewin, 2020; Jonker et al., 2021; Kaplan et al., 2018). This equity-tax can be alleviated by reaching a “critical mass” of faculty and staff from under-represented groups (Kaplan et al., 2018). If having diversity in the academic population becomes the norm then the burden placed on these groups is lessened. While it is critical to have Indigenous Scholars as part of the REB community in Canada, one scholar cannot speak to all the Indigenous communities of their jurisdiction, and this should not be required of them. Inappropriate over-inclusion of the one Indigenous REB member could result in them being unjustly pressured to review all research involving Indigenous Peoples since they are perceived to have the most expertise in this area (Cleveland et al., 2018). This might result in REB members from equity-deserving groups stepping down from serving on the REB due to sheer exhaustion (Kaplan et al., 2018). Research in this area indicates that embedding Indigenous principles into REBs that strives to decolonize research ethics practices and embraces Indigenous ways of knowing would move REBs toward a more equitable process for reviewing Indigenous research (Bull et al., 2020; Fitzpatrick et al., 2016). While researchers are required to obtain REB approval at their institutions, Indigenous self—determination is shifting this paradigm with Indigenous communities making decision about research occurring on their lands (Bull and Hudson, 2019). Despite this increasing recognition of Indigenous research rights, and REBs situated in communities, institutional REBs still require affiliated researchers to obtain ethics review for this research, a review that may not include expertise of Indigenous research ways of knowing.

Research suggests that faculty in many higher education institutions lack diversity which is then reflected in REB membership. When recruiting REB members reflective of EDI values, avoiding an equity tax is imperative to prevent burnout and further exclusion of equity deserving groups.

Equity, Diversity and Inclusion in community members

Barriers to diversity on the REB membership are not just present in members affiliated with the institution. The lack of diversity extends to all areas of the REB, including non-affiliated community members. People who volunteer their time in any endeavor tend to be white, middle-aged, highly educated women (Krishnan et al., 2023; Vezino and Crompton, 2012). Data on Canadian REB community member demographics could not be found, however, when considering the demographics of those who volunteer in their communities, in Canada, it is possible that REB community members also conform to these demographics (Churchill et al., 2022; Clairmont et al., 2025). Data from the U.S. supports this, a national survey of IRBs found that 86.8% of REB members identified as white and almost 40% were over the age of 60 (Berry et al., 2019), although demographics specific to non-affiliated REB members were not included.

The role of the non-affiliated community member is to represent the participant perspective during the review process. These members may have scientific expertise as well as acting in the role of the community member, but must not be associated with the institution(s) the REB serves in any way. Arguably, the views of the non-affiliated community member may be the most central to the mandate of the REB, to protect participants. Despite this, the voice of the non-affiliated community member is not always considered to carry as much weight as that of a seasoned researcher (Anderson, 2006; John, 2018; PRIM&R, 2023). This example of tokenism de-values and undermines the crucial perspectives of the non-affiliated community member. In the context of health research, community members, without scientific expertise, can be perceived as lacking in expertise and can be excluded from the review process entirely (Anderson et al., 2024).

The perception that REB members must be highly educated and experienced in conducting research is supported by work done by Berry and colleagues in the U. S., finding that the majority of IRB chairs have a high degree of education such as a PhD or other professional designation (Berry et al., 2019), equivalent Canadian data could not be found. Further promoting this perception is the term “lay-member” which is sometimes used to denote the non-subject matter expert or non-scientific capacity of a non-affiliated community REB member. The word “lay” implies non-expertise, however, the lived-experiences and expertise in areas such as cultural competency adds a depth to the ethics review that cannot be achieved through scientific review alone (Cox et al., 2020). This term is routinely applied to non-affiliated community members, despite no regulation or policy requiring non-affiliated community members to also have a non-subject matter expert capacity. In fact, REB member(s) with legal or privacy expertise can also be considered to have a non-scientific capacity. Canadian research ethics policy, the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS), does not use this term, favoring “community member” instead (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022).

Serving on the REB comes with a substantial workload and, in many cases, REB members are not directly renumerated for their work (Hemminki, 2016; Jonker et al., 2021). This is a considerable barrier for recruiting REB members, especially non-affiliated community members, and thus a barrier for diversity on the REB (Hung et al., 2013). REB members who hold positions within the institution either as faculty or staff can often serve on an REB as part of their work duties and are compensated as they typically would be in accordance with contractual arrangements. This can be referred to as “administrative time” for faculty members. Whereas non-affiliated community members are required to take time away from their jobs, if employed, to attend REB meetings that typically occur during the working day, as well as complete REB work, presumably in their own time. Therefore, only non-affiliated community members with financial stability can afford to volunteer their time. The motivation for faculty to serve on an REB is often different from that of a community member. For faculty members, serving on the REB furthers their experience with research and can advance careers, whereas non-affiliated community members do not tend to share these motivations (Richards et al., 2018), instead often serving on the REB for altruistic reasons. The phenomenon of compensating individuals for time, skill, and lived experience expertise does not appear to extend uniformly to the REB members. Given the lack of Canadian publications in this area, compensating non-affiliated community members does not seem to be of concern in the REB landscape. Consequently, one group of people is paid for their work, whereas another group, that brings a unique perspective to the REB and is expected to complete the same work, is not. The inequity of this situation seems obvious, yet this status quo is challenging to disrupt within the context of tight institutional budgets and funding priorities.

Not only is the workload of REB members high, but the learning curve is steep, new REB members must learn how to navigate an ethics management platform, become familiar with institutional policies and procedures, Canadian ethical standards and the nuances of how to conduct a review of the ethical acceptability of the proposed research. Even with a thorough onboarding process, the amount to learn to become an active member of the REB can remain overwhelming. This can especially be the case for non-affiliated community members who may not have academic backgrounds in research (Clairmont et al., 2025; Sengupta and Lo, 2003). Learning the language of research ethics and research methodology takes time, particularly for health-related research fields which often include medical terminology. The review conducted by scientific members and non-scientific members is the same work; however, the time taken for non-scientific members to complete this work may be much longer owing to unfamiliar terminology (Anderson, 2006; Hung et al., 2013). It could be argued that the lens of the non-affiliated community member differs from that of the subject matter expert member, however, both are still required to read and comprehend consent forms, application forms, protocols and other documents to assess the ethical acceptability of the proposed research. Additionally, both subject matter expert and non-affiliated community members hold equal weight in voting. The non-affiliated community member must be able to understand the research before an assessment of adequate participant protection and ethical acceptability can be made and if such an assessment is considered to hold less weight compared to that of a seasoned researcher, it further devalues the work of the member.

By bringing their lived experiences to the review process, the non-affiliated community member bridges the gap between the highly methodological aspect of research and the local participant perspective, embodying the ethical dogma that research must promote wellbeing or beneficence. It is well known that lived experiences contribute much value to research and research infrastructure (Nass et al., 2013; Richards et al., 2018) and efforts have substantially increased in recent years to promote patient engagement in research (Canadian Institutes of Health Research, 2014). The benefits of this engagement can be far ranging for both the patient and the research team, and as a result, guidelines for patient partner acknowledgment and compensation are starting to become established (Canadian Institutes of Health Research, 2022; Dhamanaskar et al., 2024; Fox et al., 2024; Richards et al., 2018).

Non-affiliated community members bring lived experience to the ethics review that deepens the ethics review and fulfils the role of the REB, however, their perceived lack of expertise can undermine their role on the board. Additional barriers such as renumeration and the learning curve make recruiting community members challenging.

REBs as an Equity, Diversity and Inclusion leader

The REB represents a conscious commitment to conducting research ethically. As the structural embodiment of this moral duty to protect research participants, the REB is well positioned to become a leader of EDI in research infrastructure. EDI values align well with the TCPS core principles of respect for persons, concern for welfare and justice (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022) and by applying these principles through diversification of membership and equitable treatment of all REB members, research excellence stands to benefit. Currently recruitment practices are un-inclusive, tending to rely on referrals for community members or whomever is most willing amongst faculty (Anderson, 2006; Clairmont et al., 2025; Nicholls et al., 2023; Solomon Cargill, 2018). Diversifying recruitment practices to include community outreach strategies may identify more diverse people interested in serving on the REB. Much effort has been put into improving selection and recruitment in various fields of research to better incorporate EDI values and remove bias, this can also be applied to the REB (Seto et al., 2023; Sumra et al., 2022; Wilson et al., 2018). Consideration must also be given to the community from which the REB is recruiting from, especially when a community has experienced harms as a result of research. Building partnerships, and eventually trust, will take time and REBs may need to remind themselves that recruiting members from communities that have been failed by the process of ethical review of research will require effort and diligence.

Many institutional EDI policies are underpinned with the need for training. Research ethics is not a stagnant field. Continuous technological advances in many areas such as AI, novel therapeutics and big data makes it necessary for the REB to engage in continuous education. The TCPS mandates that institutions provide training opportunities for REB members (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, 2022) to ensure the continuing expertise of the REB. Whilst the scope of this training is likely intended in ethics subject matter, to align with institutional and federal research funders goals of increasing EDI in the research enterprise, REBs can incorporate EDI training into its training objectives. Training in isolation is ineffective (Dobbin and Kalev, 2018) however, when coupled with broader changes in attitude and increased accountability, EDI initiatives gain traction and are perceived to be authentic (Pizarro Milian and Wijesingha, 2023).

REB meetings must strive for inclusivity, not only the meeting space but also to accommodate those who are required to take leave from their job to attend. Role sharing can also be an effective way of accommodating members who are not able to commit to a full-time position on the REB. Hybrid meeting options can be especially useful for members whose time commitment is limited. During the COVID-19 pandemic, many REBs were forced to convene virtually in compliance with public health directives and many have not returned to in-person meetings, favoring the convenience of online engagement. This can be both advantageous and disadvantageous and requires thoughtful management. Captioning services can be used to enhance accessibility, and a messaging function may enable members to voice their thoughts in a manner they are more comfortable with. While eliminating travel time and physical building accessibility matters, the discussion portions of the REB meeting can be challenging to host virtually. Many voices do not translate well in a virtual space (Government of Canada, 2024) which can result in relevant points being lost, can be difficult for members to comprehend and captioning services to fully capture. However, with clear moderation, the deliberations of the REB can be just as rich virtually as they would be in-person. Many practices can make virtual events more inclusive such as blurring backgrounds and adopting accessibility standards for presentations intended to be shared. Many institutions have guidance on elements such as font, letter size and color for digital documents with the aim of increasing accessibility.

Ethics management systems can be complex to navigate, especially for those who have little prior experience. They are not well suited for use with assistive technologies, such as screen readers, and institutions may use multiple platforms. This can be a significant barrier for recruitment of members who have lower digital literacy. These platforms are specifically designed to receive and implement the ethics review of proposed research and are the primary means with which the REB communicates with researchers. Despite the increase in digital tools, older people with disabilities remain the most technologically excluded (Coverdale et al., 2024; Gell et al., 2015). As discussed earlier, older people are more likely to volunteer their time and become non-affiliated community members, therefore accessibility to the ethics application must remain a key focus for the REB. Printing the application or exporting to another format may be beneficial in reducing digital accessibility barriers along with ongoing training.

Fair compensation demonstrates the value of the time, commitment and skill (Fox et al., 2024) that REB members contribute. Not only compensation, but equitable compensation, must be the default state, bringing inclusivity to the REB. Precedence of paying patient partners during research is a strong argument for justifying renumeration for non-affiliated community members. It is reasonable to suggest that without offering payment to non-affiliated community members, diversity goals of an institution may not be reached. Additionally, respecting the community member voice with relationship building between members can build trust and cohesion, further signifying all voices thin the REB are equal and important.

The REB can serve as an EDI champion in academia and by careful attention to removing barriers and diversifying practices, the REB can achieve its EDI goals. By creating inclusive and accessible spaces for the ethics review, with support where it is needed, the REB can become an EDI leader in higher education.

Conclusion

It is widely recognized that academic research institutions have historically been exclusive and dominated by people from non-equity deserving groups. Despite striving to achieve greater EDI in the academic and research spheres, discrimination and racism persist, impacting all areas of the research enterprise, including administrative processes such as REB review. Distrust remains a key barrier to authentic EDI actions and increasing EDI on REBs is complex. An REB that does not have a membership reflective of EDI values may not be able to conduct efficacious reviews of research with human participants. Lack of diversity among REB members is a key barrier to holistic and robust ethical reviews. A root cause of this stems from lack of institutional support for REBs. Recruitment practices relying on personal connections and limited outreach further perpetuate the problem. Recruiting more members to reflect EDI values from the community, and from within the institution, will strengthen the REB and its mandate. However, REBs must strive to increase EDI in meaningful ways that avoids tokenism and minimizes the potential for “equity-tax.” Without institutional support, achieving this reality is challenging, support is critical for REBs to embrace EDI values through efforts such as training and removing barriers to inclusion.

Non-affiliated community members are pivotal to the REB mandate and yet can be treated as secondary to affiliated subject matter expert members. The work of the non-affiliated community member is as valuable as the work by the member with subject matter expertise, however often they are not compensated and may even donate more time and effort owing to lack of knowledge of research concepts and terminology. This expectation misaligns with EDI values and can create a gap in equality between members.

As the embodiment of moral principles in an environment that has historically prioritized scientific advancement over human protection, the REB is uniquely positioned to be a leader in this space. Not only will such endeavors build cohesion within the REB but strengthen the ethics review, adding a depth to the review process that cannot be achieved without fully embracing and implementing EDI principles. This in turn increases public trust in research, enhancing excellence in the research enterprise.

Footnotes

Acknowledgements

I would like to extend my sincere thanks to Dawn Richardson for her excellent guidance in the writing of this manuscript. I would also like to thank Susan Marlin for her unwavering support. I would also like to thank Jennifer Payne and Megan Allore for their support and reviews.

ORCID iD

Miranda Miller

Ethical considerations

This article did not require ethical approval. There are no human participants in this article and informed consent is not required.

Funding

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

Declaration of conflicting interests

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

References

Anderson

(2006) A qualitative study of non-affiliated, non-scientist institutional review board members. Accountability in Research 13: 135–155.

Anderson

Johnson

Lynch

(2024) Inclusive, engaged, and accountable institutional review boards. Accountability in Research 31: 1287–1295.

Berry

Khodyakov

Grant

, et al. (2019) Profile of Institutional Review Board Characteristics Prior to the 2019 Implementation of the Revised Common Rule. RAND.

Bhopal

Pitkin

(2020) ‘Same old story, just a different policy’: race and policy making in higher education in the UK. Race Ethnicity and Education 23: 530–547.

Bull

Beazley

Shea

, et al. (2020) Shifting practise: recognizing Indigenous rights holders in research ethics review. Qualitative Research in Organizations and Management An International Journal 15: 21–35.

Bull

Hudson

(2019) Research governance in NunatuKavut: Engagement, expectations and evolution. International Journal of Circumpolar Health 78: 1556558.

Byrd

(2022) How diversity fails: An empirical investigation of organizational status and policy implementation on three public campuses. Education Sciences 12: 211.

Canada Research Coordinating Committee, Government of Canada (2021) Best Practices in Equity, Diversity and Inclusion in Research. Government of Canada.

Canadian Association of University Teachers (2018) Underrepresented and Underpaid: Diversity and Equity Among Canada’s Post-Secondary Education Teachers. CAUT.

10.

Canadian Institutes of Health Research (2014) Strategy for Patient-Oriented Research: Patient Engagement Framework. Canadian Institutes of Health Research. Strategy for Patient-Oriented Research-Patient Engagement Framework-CIHR (cihr-irsc.gc.ca).

11.

Canadian Institutes of Health Research (2022) Considerations when paying patient partners in research [Online]. Available at: https://www.cihr-irsc.gc.ca/e/51466.html

12.

Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada (2022) Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans [Online]. Available at: https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2022.html (accessed 13 May 2024).

13.

Churchill

Largent

Taggert

, et al. (2022) Diversity in IRB membership: Views of IRB chairpersons at US Universities and Academic Medical Centers. AJOB Empirical Bioethics 13: 237–250.

14.

Clairmont

Doerksen

Gunay

, et al. (2025) (Epistemic) Injustice and resistance in Canadian Research Ethics Governance. Ethics & Human Research 47: 2–19.

15.

Cleveland

Sailes

Gilliam

, et al. (2018) A theoretical focus on cultural taxation: Who pays for it in higher education. Advances in Social Sciences Research Journal 5: 95–98.

16.

Coverdale

Lewthwaite

Horton

(2024) Digital accessibility education in context: expert perspectives on building capacity in academia and the workplace. ACM Transactions on Accessible Computing 17: 1–21.

17.

Cox

McDonald

Townsend

(2020) Epistemic strategies in ethical review: REB members’ experiences of assessing probable impacts of research for human subjects. Journal of Empirical Research on Human Research Ethics 15: 383–395.

18.

Dewidar

Elmestekawy

Welch

(2022) Improving equity, diversity, and inclusion in academia. Research Integrity and Peer Review 7: 4.

19.

Dhamanaskar

Tripp

Vanstone

, et al. (2024) Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey. Health Expectations 27: e13971.

20.

Dobbin

Kalev

(2018) Why doesn’t diversity training work? The challenge for industry and academia. Anthropology Now 10: 48–55.

21.

Drolet

M-J

Rose-Derouin

Leblanc

J-C

, et al. (2023) Ethical Issues in research: perceptions of researchers, research ethics board members and research ethics experts. Journal of Academic Ethics 21: 269–292.

22.

Fitzpatrick

Martiniuk

D’Antoine

, et al. (2016) Seeking consent for research with indigenous communities: a systematic review. BMC Medical Ethics 17: 65.

23.

Fournier

Stewart

Adams

, et al. (2023) Systemic disruptions: decolonizing indigenous research ethics using indigenous knowledges. Research Ethics 19: 325–340.

24.

Fox

Fergusson

Sadeknury

, et al. (2024) What guidance exists to support patient partner compensation practices? A scoping review of available policies and guidelines. Health Expectations 27: e13970.

25.

Gell

Rosenberg

Demiris

, et al. (2015) Patterns of technology use among older adults with and without disabilities. Gerontologist 55: 412–421.

26.

Gewin

(2020) The time tax put on scientists of colour. Nature 583: 479–481.

27.

Government of Canada (2024) Best practices for accessible virtual events [Online]. Available at: https://a11y.canada.ca/en/best-practices-for-accessible-virtual-events/ (accessed 24 February 2025).

28.

Government of Canada. Equity, diversity and inclusion requirements and practices [Online]. Available at: https://www.chairs-chaires.gc.ca/program-programme/equity-equite/index-eng.aspx (2025, accessed 1 October 2024).

29.

Government of Canada. Food and Drug Regulations, Part C. Division 5, Drugs for Clinical Trials Involving Human Subjects. Government of Canada.

30.

Grenz

(2023) World view. Nature 616: 221.

31.

Guta

Wilson

Flicker

, et al. (2010) Are we asking the right questions? A review of Canadian REB practices in relation to community-based participatory research. Journal of Empirical Research on Human Research Ethics 5: 35–46.

32.

Health Canada (2023) Guidance Document: Part C, Division 5 of the Food and Drug Regulations. Health Canada.

33.

Hemminki

(2016) Research ethics committees in the regulation of clinical research: Comparison of Finland to England, Canada, and the United States. Health Research Policy and Systems 14(1): 5.

34.

Hung

Ayala

Morales

, et al. (2013) Sustaining engagement and partnership: Model of enhancing cultural capital among nonaffiliated IRB members. Journal of Empirical Research on Human Research Ethics 8: 34–45.

35.

John

(2018) Ten Steps to Embracing Diversity in IRBs and IACUCs Through the Art of Bread Making [Online]. PRIM&R. Available at: https://blog.primr.org/ten-steps-to-embracing-diversity/

36.

Jonker

Vasquez Guzman

Mccully

(2021) Addressing Structural Racism Within Institutional Bodies Regulating Research. American Physiological Society.

37.

Kaplan

Gunn

Kulukulualani

, et al. (2018) Challenges in recruiting, retaining and promoting racially and ethnically diverse faculty. Journal of the National Medical Association 110: 58–64.

38.

Krishnan

Mitchell

Lapin

(2023) A research study on the demographics of volunteering. Journal of Student Research 12.

39.

Mateo

Williams

(2023) Understanding and addressing how racism can affect medical school admissions—making the invisible visible. JAMA Network Open 6: e232291.

40.

Mellifont

(2020) A critical exploration of university policy supporting the employment and career development of people with disability in the Australian academy. Australian Journal of Career Development 29: 117–126.

41.

Meloney

Ahmed

Bierer

(2023) Review of diversity, equity, and inclusion by ethics committees: A Delphi consensus statement. Med 4: 497–504.

42.

Mohamed

Beagan

(2019) ‘Strange faces’ in the academy: Experiences of racialized and Indigenous faculty in Canadian universities. Race Ethnicity and Education 22: 338–354.

43.

Nass

Levine

Yancy

(2013) Methods for Involving Patients in Topic Generation for Patient-Centered Comparative Effectiveness Research: An International Perspective. Washington, DC: Institute of Medicine, National Academies Press.

44.

Nicholls

Taylor

James

, et al. (2023) A cross sectional survey of recruitment practices, supports, and perceived roles for unaffiliated and non-scientist members of IRBs. AJOB Empirical Bioethics 14: 174–184.

45.

Pizarro Milian

Wijesingha

(2023) Why do EDI policies fail? An inhabited institutions perspective. Equality Diversity and Inclusion An International Journal 42: 449–464.

46.

PRIM&R (2023) Valuing Community Advisory Board Members: An Urgent Call Towards Critical Equity [Online]. Available at: https://blog.primr.org/valuing-community-advisory-board-members/

47.

Prince

Francis

(2023) Barriers to equality, diversity and inclusion in research and academia stubbornly persist. So, what are we doing about it? Disease Models & Mechanisms 16.

48.

Richards

Jordan

Strain

, et al. (2018) Patient partner compensation in research and health care: The patient perspective on why and how. Patient Experience Journal 5: 6–12.

49.

Sabati

(2019) Upholding “colonial unknowing” through the IRB: Reframing institutional research ethics. Qualitative Inquiry 25: 1056–1064.

50.

Sengupta

(2003) The roles and experiences of nonaffiliated and non-scientist members of institutional review boards. Academic Medicine 78: 212–218.

51.

Seto

Leconte

(2023) Practical Tips for Intentional and Inclusive Recruiting and Hiring for Academic Research Laboratories. ChemRxiv. doi:10.26434/chemrxiv-2023-rxb7p

52.

Side

Robbins

(2007) Institutionalizing inequalities in Canadian universities: The Canada research chairs program. NWSA Journal 19: 163–181.

53.

Solomon Cargill

(2018) What can IRBs learn from CABs? A qualitative analysis of the experiences of recruitment and training of nonscientist members on research review boards. Journal of Empirical Research on Human Research Ethics 13: 88–94.

54.

Sumra

Riner

Arjani

, et al. (2022) Minimizing implicit bias in search committees. American Journal of Surgery 224: 1179–1181.

55.

Thomson

Gooberman-hill

(2024) Why EDI Matters to Research Organisations. Nurturing Equality, Diversity and Inclusion. Policy Press.

56.

Thomson

Gooberman-hill

Thomson

, et al. (2024) Nurturing Equality, Diversity and Inclusion: Support for Research Careers in Health and Biomedicine Nurturing Equality, Diversity and Inclusion. Policy Press.

57.

Tufford

Newman

Brennan

, et al. (2012) Conducting research with lesbian, gay, and bisexual populations: Navigating research ethics board reviews. Journal of Gay & Lesbian Social Services 24: 221–240.

58.

Universities Canada (2019) Equity, Diversity and Inclusion at Canadian Universities. Report on the 2019 National Survey. Universities Canada.

59.

Universities Canada (2022) Equity, Diversity and Inclusion at Canadian Universities: Report on the 2022 Survey. Universities Canada.

60.

U. S. Food and Drug Administration (2023) Protection of Human Subjects; Standards for Institutional Review Boards for Clinical Investigations, 21 CFR Part 56. U. S. Food and Drug Administration.

61.

Vezino

Crompton

(2012) Volunteering in Canada. Canadian Social Trends 11: 37–56.

62.

Wilson

Depass

Bean

(2018) Institutional interventions that remove barriers to recruit and retain diverse biomedical PhD students. CBE—Life Sciences Education 17: ar27.