Community engagement in biobanking: Experiences from the eMERGE Network

Community engagement in biobanking: Experiences from the eMERGE Network

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...

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Veröffentlicht in:Genomics, society, and policy society, and policy, 2010-12, Vol.6 (3), p.50-50, Article 50
Hauptverfasser: Lemke, Amy A, Wu, Joel T, Waudby, Carol, Pulley, Jill, Somkin, Carol P, Trinidad, Susan Brown
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Engineering Ethics
Ethics
Philosophy of Science
Science and Technology Studies
Social Sciences
Theory of Medicine/Bioethics
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container_end_page 50
container_issue 3
container_start_page 50
container_title Genomics, society, and policy
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creator Lemke, Amy A
Wu, Joel T
Waudby, Carol
Pulley, Jill
Somkin, Carol P
Trinidad, Susan Brown
description 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.
doi_str_mv 10.1186/1746-5354-6-3-50
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subjects Engineering Ethics
Ethics
Philosophy of Science
Science and Technology Studies
Social Sciences
Theory of Medicine/Bioethics
title Community engagement in biobanking: Experiences from the eMERGE Network
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