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Title

Community Recommendations on Biobank Governance: Results from a Deliberative Community Engagement in California (PLOS One)

Publication Topics

California Health Interview Survey; 2009 California Health Interview Survey (CHIS 2009)

Publication Type

CHIS Journal Article

Publication Date

2017-02-24T08:00:00Z

Author 1

<a onclick="OpenPopUpPage('http://healthpolicy.ucla.edu/_layouts/listform.aspx?PageType=4&ListId={7AAD61FA-4BCB-48C0-B0B7-87AFDC3673EF}&ID=1497&RootFolder=*', RefreshPage); return false;" href="http://healthpolicy.ucla.edu/_layouts/listform.aspx?PageType=4&ListId={7AAD61FA-4BCB-48C0-B0B7-87AFDC3673EF}&ID=1497&RootFolder=*">Sarah M. Dry</a>

Author 2

<a onclick="OpenPopUpPage('http://healthpolicy.ucla.edu/_layouts/listform.aspx?PageType=4&ListId={7AAD61FA-4BCB-48C0-B0B7-87AFDC3673EF}&ID=151&RootFolder=*', RefreshPage); return false;" href="http://healthpolicy.ucla.edu/_layouts/listform.aspx?PageType=4&ListId={7AAD61FA-4BCB-48C0-B0B7-87AFDC3673EF}&ID=151&RootFolder=*">et al</a>

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Abstract

​Authors sought to describe community recommendations for biorepository governance and oversight using deliberative community engagement (DCE), a qualitative research method designed to elicit lay perspectives on complex technical issues. Stakeholders were asked to provide input on governance of large biorepositories at the University of California (UC), a public university. 

Authors defined state residents as stakeholders and recruited residents from two large metropolitan areas, Los Angeles (LA) and San Francisco (SF). In LA, English and Spanish speakers were recruited; in SF the DCE was conducted in English only. Individuals who had completed the 2009 California Health Interview Survey and were willing to be re-contacted for future studies were recruited. Using stratified random sampling (by age, education, race/ethnicity), 162 potential deliberants were contacted of whom 53 agreed to participate.

Fifty-one completed the 4-day DCE in June (LA) and September-October (SF), 2013. Each DCE included discussion among deliberants facilitated by a trained staff and simultaneously-translated in LA. Deliberants also received a briefing book describing biorepository operations and regulation. During the final day of the DCE, deliberants voted on governance and oversight recommendations using an audience response system.

This paper describes 23 recommendations (of 57 total) that address issues including: educating the public, sharing samples broadly, monitoring researcher behavior, using informative consent procedures, and involving community members in a transparent process of biobank governance.

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Community Recommendations on Biobank Governance: Results from a Deliberative Community Engagement in California (PLOS One)

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Press Release

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California Health Interview Survey (CHIS)

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Version: 2.0
Created at 10/18/2017 11:36 AM by i:0#.f|uclachissqlmembershipprovider|celeste
Last modified at 10/18/2017 11:39 AM by i:0#.f|uclachissqlmembershipprovider|celeste