July Research Roundup

A Supplement to Extend Study of Biobanking

Gail Henderson, Ph.D., and a multidisciplinary team of colleagues from the University of North Carolina at Chapel Hill, Duke University and Case Western Reserve have received a $200,000 supplement to their R01 grant from the National Institutes of Health to extend their work studying the organizational aspects of biobanking. Henderson is director of the Center for Genomics and Society at UNC and director of the NC Translational and Clinical Sciences (NC TraCS) Institute’s Clinical and Community Research Ethics Core.

NC TraCS is home to UNC’s NIH Clinical and Translational Science Awards (CTSA) and belongs to a consortium of 60 such academic institutions nationwide working to accelerate the pace of biomedical research and movement of discoveries into clinical and community use. This supplement, combined with the original NIH award to study biobanking, enables Henderson’s team to administer a survey to a carefully selected sample of 500+ biobanks, specifically including CTSA-sponsored biobanks.

As the field of genomic medicine expands, issues about the ethical, legal and social implications (ELSI) of these endeavors grow in complexity. In particular, there are concerns surrounding biobanking – the long-term storage of human genetic specimens and data for the purpose of future research not known at the time a person consents to its collection.

“The idea is to examine ELSI policies adopted by biobanks and their organizational diversity (in terms of mission, members, governance, work and environment) among the many different types of biobanks that exist in the U.S.,” explained Henderson. “These include biobanks that are small, large, academic, government, commercial, non-profit, networked, based on specimens collected in patient care or public health programs but ‘repurposed’ to be used for research,” she said.

After completion of the study, Henderson’s team will help publicize and consider application of their findings as recommendations for biobank governance to CTSA communities nationwide.

“Colleagues from other groups who are working on aspects of biobank organization and function have expressed an interest in working with us on the findings for addressing specific issues, such as the ELSI of returning individual research results to volunteer study participants,” added Henderson.

The team of investigators includes Arlene Davis, J.D., associate professor of social medicine and a co-leader of the NC TraCS Clinical and Community Research Ethics Core; Jim Evans, M.D., Ph.D., professor of genetics and medicine and director, Cecil G. Sheps Center for Health Services Research; Jean Cadigan, Ph.D., research associate in social medicine; Bryan Weiner, Ph.D., professor of health policy and management, Gillings School of Global Public Health; and Teresa Edwards, assistant director for survey research, Odum Institute for Research in Social Science, all from UNC. In addition there are two collaborators, Robert Mitchell, Ph.D., Duke University, and Aaron Goldenberg, Ph.D., Case Western Reserve University, who are part of the R01 and will continue to be involved in the supplement.