Protecting Participants, Promoting Progress: Public Perspectives on Community Advisory Boards (CABs) in Biobanking
In: Journal of empirical research on human research ethics: JERHRE ; an international journal, Band 6, Heft 3, S. 19-30
ISSN: 1556-2654
Few studies have explored public perspectives on community advisory board (CAB) involvement in biobank-based research. This study held focus groups (n = 7) with 48 individuals residing in the catchment of an emerging comprehensive tissue and DNA biobank in the state of Iowa. Participants recognized benefits of bringing CABs into biobank oversight, including additional levels of protection they could afford research participants. Yet, CAB goals of protecting participants were also seen as potentially antithetical to research and medical progress. Participants expressed uncertainty about the relationship of CABs to IRBs, communities, and industry. Findings suggest members of the public are in principle supportive of CAB involvement in biobanking, yet anticipate a range of problems and concerns. These perceptions will need to be proactively addressed.