Stakeholder perceptions of benefit sharing and returning research results in Kaiser Permanente's biobank program

Kaiser Permanente Northern California (KPNC) is assembling a large biobank, known as the Research Program on Genes, Environment, and Health (RPGEH) that will link data from 500,000 participants' medical records to DNA and environmental data. The purposes of this study were to 1) examine values of different stakeholder groups regarding how to share benefits of this program with the community; 2) examine attitudes regarding whether, why, and when it is appropriate to share genetic research results with participants; and 3) synthesize these attitudes and values in order to identify promising strategies for RPGEH benefits sharing, and governance policies. To date, we have conducted 47 semi-structured interviews with representatives from six stakeholder groups (including internal and external scientists, Human Research Protection Program staff, KPNC leaders, RPGEH participants, and individuals who declined participation). We also conducted two focus groups with members of the RPGEH Community Advisory Panel. Three independent researchers coded transcripts and analyzed data. Overall, privacy concerns including potential discrimination were cited by many stakeholders as a barrier to returning research results to participants. Many stakeholders endorsed a need to pass on benefits of this research program to Kaiser members, and to the community more broadly. Several strategies were suggested by community advisory panel members for dealing with benefit sharing and/or report-back of RPGEH results. Results provide insight into the unique issues and responsibilities inherent in housing a large biobank within an integrated delivery system. We provide preliminary suggestions for governance structure and benefit sharing based on findings.