Genetic Biobanks: Deposits, Withdrawals, and Consumer Protection

Biobanks, and studies based on them, have swiftly proliferated in recent years. These repositories of information and/or biological samples from many patients have enabled researchers to unlock a host of associations between genes and diseases.

But even as they contribute to 21st-century science, many of the rules that govern biobanks are survivors of a pre-genomic era of collecting and storing tissue and blood samples, and vary widely between institutions. As ideas about de-identification, consent, and return of results evolve, is it time to re-think our standards for biobanks?

The Genetics and Public Policy Center will consider this question at its next Genetic Perspectives on Policy Seminar (GenePOPS), to be held Tuesday, December 9 at 2:00 p.m. EST. The seminar, “Genetic Biobanks: Deposits, Withdrawals, and Consumer Protection,” will take place at the National Press Club in Washington, DC. Anyone may attend this free seminar, but we encourage advance registration at http://www.dnapolicy.org/event.registration.php?event_id=34.

Panelists will examine the proliferation of genetic research databases to study genetic contributions to disease, the policies governing biobanks, and the conditions under which people are willing to contribute genetic information to such biobanks. The program will address the wide range of biobanks currently in operation, their uses, and their access policies for researchers and the non-research community, including law enforcement. Panelists will also discuss the logistics of making and keeping genetic data in biobanks private, the extent to which research results can and should be returned to participants in the studies, and other factors that influence public participation in genetic research.

We hope you will join us for this timely event.

Moderator
Kathy Hudson, director, Genetics and Public Policy Center, Johns Hopkins University

Panel

Isaac Kohane, director of the Children's Hospital Informatics Program and Henderson Associate Professor of Pediatrics and Health Sciences and Technology at Harvard Medical School

Teri Manolio, senior advisor to the director, National Human Genome Research Institute

Joan Scott, deputy director, Genetics and Public Policy Center

The speakers will be followed by panel discussion, reporter questions, and audience Q & A.