E04 - Advancing Justice Through Community Engagement in Governance for Research Biobanks

The legacy of Henrietta Lacks has taught the human research protections community many important lessons regarding consent, community engagement, and the power of an individual’s contribution to the health and welfare of many. Perhaps one of the most important outcomes of the Lacks family legacy has been the public recognition of the importance of incorporating the participant perspective and voice into the process for oversight and governance of the responsible use of biospecimens in research. The incorporation of members of the Lack’s family into the HeLa Genome Data Access Working Group serves as an example of participant engagement in oversight of biospecimens and calls HRPPs to evaluate how they might adopt similar solutions for the oversight of biospecimen use at their own organizations. Drawing from the lessons learned from the Lacks family legacy, this session will explore potential strategies for engaging the participant perspective in decisions regarding the responsible use of biospecimens. Various models for participant engagement and oversight will be discussed.