Genetics and Public Policy Center to study genetic researchers’ views on their work
The National Human Genome Research Institute (NHGRI) has awarded the Genetics and Public Policy Center a two-year grant to examine the views and practices of genetic researchers who collect and study banked human DNA. The center will work in collaboration with the Institute for Public Health Genetics at the University of Washington.
A part of the Johns Hopkins Berman Institute of Bioethics, the Genetics and Public Policy Center (GPPC) was awarded the grant on Aug. 13 and has begun work on this new study. Headed by Dave Kaufman, the center’s director of research and statistics, the study will systematically measure the attitudes, preferences and actual practices of geneticistsaround issues of informed consent, data sharing, privacy and the return of research results to participants.
“The use of large genomic biobanks and the number of researchers who rely on them are increasing rapidly,” Kaufman said. “Understanding researchers’ views about the current landscape of biobank research will help policymakers and scientists as they design new studies and develop research guidelines.”
Kaufman added that considering perspectives of the human genetics community should help to both maximize the scientific benefits of biobanks and ensure that such work is conducted ethically.
This study will build on the GPPC’s Public Consultation Project, an ongoing investigation of public attitudes toward participation in population-wide genetic research to examine the role of genes and environment in human health.
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