by Elizabeth White, program manager, United States Department of Energy (DOE)
Active participation and input from community/unaffiliated members is critical to any institutional review board (IRB). How do we ensure that community members feel empowered and educated in order to freely express their opinions on proposed research?
This was the topic of a workshop organized by the University of Southern California (USC) and the DOE in December 2010. The pre-conference program, Enhancing the Contributions of Community IRB Members, was held in conjunction with the 2010 Advanced Ethical Research Conference. It was attended by prominent individuals in the field of human subjects protections and community IRB members from more than a dozen research institutions and federal agencies.
As a result of the meeting, participants agreed that a dialogue with the broader human subjects protections community should continue. Organizers and participants agreed to follow up on the proposed strategies generated during the discussion, as follows:
- Developing a best practices white paper and/or finding other opportunities to share successful approaches used by IRBs to enhance the contributions of community IRB members. For example: nurturing an atmosphere in which different points of view are valued; linking new community members with experienced board members; providing opportunities for education; requiring primary and secondary protocol reviewers to develop a one-page summary in layman’s terms and highlighting any issues or concerns; and encouraging community members to serve as primary, secondary, or tertiary reviewers.
- Listening to the archived PRIM&R webinar for community members. Participants will have the opportunity to learn more about the role and experience of the community member, the IRB’s responsibilities, and other initiatives for enhancing community member participation.
- Revitalizing organizations’ community member listservs. See DOE’s community listserv.
- DOE, USC, and other organizations joining together to hold teleconferences on topics of interest for community IRB members.
- Holding regional lunches to provide networking opportunities for community members in large metropolitan areas with multiple IRBs, rotating the location among local organizations.
- Making existing training materials and resource manuals available to the larger community. USC,
, and Research Triangle Institute have some wonderful materials. Universityof Kentucky
- Enhancing organization websites.
- Generating publicity on this topic in journals and spreading the word at professional meetings.