Center To Hold GenePOPS On Biobanks

November 24, 2008

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. The event is

free, and the public is welcome.

Speakers will include Isaac Kohane, director of the Children's

Hospital Informatics Program and 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; and Joan , deputy director of the

Center. 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.

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