Written by Miranda Miller, CHEER Project Manager, based on a peer-reviewed article entitled “Barriers to Equity, Diversity and Inclusion in Canadian Research Ethics Board membership: Challenges and opportunities for reform” which can be found here.
Why does EDI matter?
Equity, Diversity and Inclusion (EDI) is a hot topic in research. More emphasis is being placed on ensuring that participants are recruited from diverse backgrounds, and equitable inclusion is being embedded at the initial research design stage to increase access to research for those who need it most. When the research ecosystem represents EDI values, the breadth and depth of research is increased, and this makes for better research that impacts more people in Canada. However, the focus of EDI in research should not stop at participants or research teams — the Research Ethics Board (REB) must also be included in this effort to increase EDI.
Barriers to EDI
Despite REBs being governed by various policies and regulations, there are no strong requirements for REBs to have a membership reflective of EDI values. In fact, research suggests that REBs are lacking in diversity among their memberships.1 An REB that is not diverse enough may miss important ethical considerations and a well-rounded, robust review may be hard to achieve. This lack of diversity has a number of causes:
- REB members are typically recruited from the institution’s staff and faculty, if this group is not diverse to begin with, this is reflected in the REB
- if recruitment of community members is not wide ranging, this further compounds the issue; and,
- the time commitment for REB members is immense and can be a significant factor when deciding to join the REB. This is especially true for faculty from equity deserving groups who often need to work harder to overcome biased institutional policies and so may not have time to serve on REBs.
Barriers specific to Community Members
Barriers to EDI values on the REB can be keenly felt by community members. Community members represent the voice of the participant; this is central to the mandate of the REB. However, research suggests that sometimes community members can be perceived as lacking expertise and their views may be considered less important compared to that of the seasoned researcher member — this de-values the work of the community member.2 To add to this, many community members are not paid for their time whereas faculty and staff members are, i.e. they do REB work as part of the job for which they are compensated while community members must take time off work or use their personal time for REB work. The work for the REB by community members and faculty or staff members is the same work, they still must read and understand the research in order to make a decision on ethical acceptability, their voting rights are also the same. The inequity of this seems obvious and yet this status quo is challenging to disrupt when institutional budgets are tight and REBs are chronically underfunded.
Ways to increase EDI on the REB
There are many ways to work towards increasing EDI on the REB, a few suggestions are listed here:
- Diversifying recruitment practices by building connections and partnerships with community groups will take time and will be fruitful with effort and diligence.
- Ongoing training for REB members is key, not only with respect to technological advances impacting the ethics review, but also in EDI matters.
- Printing or exporting ethics applications to another format may help members with challenges navigating ethics management platforms. For example, these platforms are not well suited for use with assistive technologies such as screen readers.
- Creating an inclusive meeting space that accommodates and welcomes all REB members will result in discussions that are rich and respectful.
- Compensating community member’s time and expertise is crucial and recognizes the value of their work.
- Relationship building between members can establish trust and cohesion to ensure all voices are heard during the ethics review.
The REB as an EDI Champion
As an entity committed to research that is ethical and protects participants, the REB is perfectly positioned to become a champion in the EDI space. REBs will need the support of their institution to work towards memberships that truly reflect and champion EDI values. With careful attention and by diversifying practices, the REB can be an EDI leader in the research enterprise. Such endeavors will build cohesion within the REB and 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 Canadian research enterprise.
References
- Berry SH, Khodyakov D, et al. Profile of Institutional Review Board Characteristics Prior to the 2019 Implementation of the Revised Common Rule. Research report published by RAND Corporation. Santa Monica, California. 2019. https://www.rand.org/content/dam/rand/pubs/research_reports/RR2600/RR2648/RAND_RR2648.pdf ↩︎
- Anderson EE, Johnson A, & Lynch HF (2023). Inclusive, engaged, and accountable institutional review boards. Accountability in Research, 31(8), 1287–1295. https://doi.org/10.1080/08989621.2023.2220884 ↩︎