Community Engagement and the Protection- Inclusion Dilemma

In articulating the protection-inclusion dilemma, Friesen et al. (2023) identify an important issue facing institutional review boards (IRBs) and elucidate his- torical factors contributing to its development. The authors offer a range of potential strategies for helping IRBs to navigate the tension between protection and exclusion of underrepresented participant groups, although these largely maintain the status quo of paternalistic IRBs making decisions disconnected from context. Significantly, the protection-inclusion dilemma they describe is most acute when IRBs are making decisions for, or on behalf of, underrepre- sented or previously exploited groups in the absence of direct input from those groups. When such groups instead set research priorities for their own commun- ities and are involved in all stages of the research process—from study design through to interpretation and dissemination of research findings—potential harms from research participation are more effectively mitigated and inclusion of under-represented groups is more effective than could be achieved by any IRB. A clear example of the value of this approach is the shift within Indigenous genomics research in recent years.