title: Protecting participants, promoting progress: public perspectives on community advisory boards (CABs) in biobanking.
abstract: 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.
authors.affiliation: Department of Internal Medicine, Carver College of Medicine, University of Iowa, Iowa City, IA 52242, USA. christian-simon@uiowa.edu
authors.forename: Christian M
authors.initials: CM
authors.lastname: Simon
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Newbury
authors.forename: Jamie L
authors.initials: JL
authors.lastname: 'heureux
mesh_terms: D001294:Attitude to Health; D018070:Biological Specimen Banks / Q000941:ethics*; D003256:Community Participation; D003219:Confidentiality / Q000941:ethics*; D030561:Databases, Nucleic Acid / Q000941:ethics; D028744:Ethics Committees, Research; D032984:Ethics, Research; D006040:Goals; D006801:Humans; D007484:Iowa; D011639:Public Opinion