Literature DB >> 21931234

Protecting participants, promoting progress: public perspectives on community advisory boards (CABs) in biobanking.

Christian M Simon1, Elizabeth Newbury, Jamie L 'heureux.   

Abstract

Few studies have explored public perspectives on community advisory board (CAB) involvement in biobank-based research. This study held focus groups (n = 7) with 48 individuals residing in the catchment of an emerging comprehensive tissue and DNA biobank in the state of Iowa. Participants recognized benefits of bringing CABs into biobank oversight, including additional levels of protection they could afford research participants. Yet, CAB goals of protecting participants were also seen as potentially antithetical to research and medical progress. Participants expressed uncertainty about the relationship of CABs to IRBs, communities, and industry. Findings suggest members of the public are in principle supportive of CAB involvement in biobanking, yet anticipate a range of problems and concerns. These perceptions will need to be proactively addressed.

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Year:  2011        PMID: 21931234     DOI: 10.1525/jer.2011.6.3.19

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  6 in total

1.  Public perspectives on biospecimen procurement: what biorepositories should consider.

Authors:  Jamie L'Heureux; Jeffrey C Murray; Elizabeth Newbury; Laura Shinkunas; Christian M Simon
Journal:  Biopreserv Biobank       Date:  2013-05-29       Impact factor: 2.300

Review 2.  Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards.

Authors:  Hojjat Soofi; Evert van Leeuwen
Journal:  J Community Genet       Date:  2016-08-05

3.  Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.

Authors:  Wylie Burke; Laura M Beskow; Susan Brown Trinidad; Stephanie M Fullerton; Kathleen Brelsford
Journal:  J Law Med Ethics       Date:  2018-03-27       Impact factor: 1.718

4.  Biobanks and electronic medical records: enabling cost-effective research.

Authors:  Erica Bowton; Julie R Field; Sunny Wang; Jonathan S Schildcrout; Sara L Van Driest; Jessica T Delaney; James Cowan; Peter Weeke; Jonathan D Mosley; Quinn S Wells; Jason H Karnes; Christian Shaffer; Josh F Peterson; Joshua C Denny; Dan M Roden; Jill M Pulley
Journal:  Sci Transl Med       Date:  2014-04-30       Impact factor: 17.956

5.  Characterizing biobank organizations in the U.S.: results from a national survey.

Authors:  Gail E Henderson; R Jean Cadigan; Teresa P Edwards; Ian Conlon; Anders G Nelson; James P Evans; Arlene M Davis; Catherine Zimmer; Bryan J Weiner
Journal:  Genome Med       Date:  2013-01-25       Impact factor: 11.117

6.  Forming and implementing community advisory boards in low- and middle-income countries: a scoping review.

Authors:  Yang Zhao; Thomas Fitzpatrick; Bin Wan; Suzanne Day; Allison Mathews; Joseph D Tucker
Journal:  BMC Med Ethics       Date:  2019-10-17       Impact factor: 2.652

  6 in total

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