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Published by the ESRC Genomics Network, Genomics, Society and Policy is a peer reviewed online journal that provides an outlet for interdisciplinary research on the social, ethical and legal aspects of genomics and related emergent technologies such as nanotechnology and stem cell research.

Back to list of articles in Vol 6, No.3

Volume 6, No. 3

Community engagement in biobanking: Experiences from the eMERGE Network

Amy A. Lemke, Joel T. Wu, Carol Waudby, Jill Pulley, Carol P. Somkin, Susan Brown Trinidad

Abstract

Advances in genomic technologies and the promise of “personalised medicine” have
spurred the interest of researchers, healthcare systems, and the general public.
However, the success of population-based genetic studies depends on the willingness
of large numbers of individuals and diverse communities to grant researchers access
to detailed medical and genetic information. Certain features of this kind of research –
such as the establishment of biobanks and prospective data collection from
participants’ electronic medical records – make the potential risks and benefits to
participants difficult to specify in advance. Therefore, community input into biobank
processes is essential. In this report, we describe community engagement efforts
undertaken by six United States biobanks, various outcomes from these engagements,
and lessons learned. Our aim is to provide useful insights and potential strategies for
the various disciplines that work with communities involved in biobank-based
genomic research.

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