243731 Stakeholder perceptions of benefit sharing and returning research results in Kaiser Permanente's biobank program

Tuesday, November 1, 2011: 1:30 PM

Julie N. Harris, PhD, MPH , Research Program on Genes, Environment, and Health, Kaiser Permanente Division of Research, Oakland, CA
Carol Somkin , Division of Research, Kaiser Permanente, Oakland, CA
Petra Liljestrand, PhD , Division of Research, Kaiser Permanente, Oakland, CA
Catherine Schaefer, PhD , Division of Research, Kaiser Permanente, Oakland, CA
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.

Learning Areas:
Communication and informatics
Social and behavioral sciences

Learning Objectives:
1. Define the unique challenges and responsibilities of conducting a large biobank within an integrated delivery system. 2. Differentiate different stakeholder perspectives on benefit sharing and returning individual genetic research results to participants in a large biobank. 3. Describe different strategies for returning individual research results to participants in Kaiser Permanente's biobank. 4. Discuss the most appropriate strategies for returning the benefits of a large public biobank to community members and biobank participants.

Keywords: Research Ethics, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I conducted the majority of the research on this project, conceptualized the research questions, and wrote the primary manuscript.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.