Literature DB >> 24337477

Stewardship practices of U.S. biobanks.

Gail E Henderson1, Teresa P Edwards, R Jean Cadigan, Arlene M Davis, Catherine Zimmer, Ian Conlon, Bryan J Weiner.   

Abstract

Biobanks require new governance models that address their ethical and regulatory challenges. One model relies on stewardship of specimens throughout their life course. Here, we discuss findings from our survey of 456 U.S. biobank managers that addressed whether and how biobanks steward their specimens. The findings reveal that most biobanks do not create ongoing relationships with contributors but do practice stewardship over storing and sharing of specimens. Biobanks now need guidance to fully articulate stewardship practices that ensure respect for contributors while facilitating research.

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Year:  2013        PMID: 24337477      PMCID: PMC4185188          DOI: 10.1126/scitranslmed.3007362

Source DB:  PubMed          Journal:  Sci Transl Med        ISSN: 1946-6234            Impact factor:   17.956


  29 in total

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Authors:  Francis S Collins; Eric D Green; Alan E Guttmacher; Mark S Guyer
Journal:  Nature       Date:  2003-04-14       Impact factor: 49.962

2.  Relationships with test-tubes: where's the reciprocity?

Authors:  Kelly Fryer-Edwards; Stephanie M Fullerton
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3.  From consent to institutions: designing adaptive governance for genomic biobanks.

Authors:  Kieran C O'Doherty; Michael M Burgess; Kelly Edwards; Richard P Gallagher; Alice K Hawkins; Jane Kaye; Veronica McCaffrey; David E Winickoff
Journal:  Soc Sci Med       Date:  2011-07-02       Impact factor: 4.634

4.  Principles of human subjects protections applied in an opt-out, de-identified biobank.

Authors:  Jill Pulley; Ellen Clayton; Gordon R Bernard; Dan M Roden; Daniel R Masys
Journal:  Clin Transl Sci       Date:  2010-02       Impact factor: 4.689

5.  Meeting the governance challenges of next-generation biorepository research.

Authors:  Stephanie M Fullerton; Nicholas R Anderson; Greg Guzauskas; Dena Freeman; Kelly Fryer-Edwards
Journal:  Sci Transl Med       Date:  2010-01-20       Impact factor: 17.956

6.  Research ethics. Research practice and participant preferences: the growing gulf.

Authors:  S B Trinidad; S M Fullerton; E J Ludman; G P Jarvik; E B Larson; W Burke
Journal:  Science       Date:  2011-01-21       Impact factor: 47.728

7.  A decade of experience in the development and implementation of tissue banking informatics tools for intra and inter-institutional translational research.

Authors:  Waqas Amin; Harpreet Singh; Andre K Pople; Sharon Winters; Rajiv Dhir; Anil V Parwani; Michael J Becich
Journal:  J Pathol Inform       Date:  2010-08-10

8.  The University of Michigan Honest Broker: a Web-based service for clinical and translational research and practice.

Authors:  Andrew D Boyd; Paul R Saxman; Dale A Hunscher; Kevin A Smith; Timothy D Morris; Michelle Kaston; Frederick Bayoff; Bruce Rogers; Pamela Hayes; Namrata Rajeev; Eva Kline-Rogers; Kim Eagle; Daniel Clauw; John F Greden; Lee A Green; Brian D Athey
Journal:  J Am Med Inform Assoc       Date:  2009-08-28       Impact factor: 4.497

9.  Understanding incidental findings in the context of genetics and genomics.

Authors:  Mildred K Cho
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

10.  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

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  18 in total

1.  Which Results to Return: Subjective Judgments in Selecting Medically Actionable Genes.

Authors:  Gabriel Lázaro-Muñoz; John M Conley; Arlene M Davis; Anya E R Prince; R Jean Cadigan
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-01

2.  Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.

Authors:  Stephanie A Kraft; Mildred K Cho; Katherine Gillespie; Meghan Halley; Nina Varsava; Kelly E Ormond; Harold S Luft; Benjamin S Wilfond; Sandra Soo-Jin Lee
Journal:  Am J Bioeth       Date:  2018-04       Impact factor: 11.229

3.  Grudging Trust and the Limits of Trustworthy Biorepository Curation.

Authors:  Karen M Meagher; Eric T Juengst; Gail E Henderson
Journal:  Am J Bioeth       Date:  2018-04       Impact factor: 11.229

4.  From in vivo to in vitro: How the Guatemala STD Experiments Transformed Bodies Into Biospecimens.

Authors:  Kayte Spector-Bagdady; Paul A Lombardo
Journal:  Milbank Q       Date:  2018-04-13       Impact factor: 4.911

5.  "Forward-Thinking" in U.S. Biobanking.

Authors:  R Jean Cadigan; Teresa P Edwards; Dragana Lassiter; Arlene M Davis; Gail E Henderson
Journal:  Genet Test Mol Biomarkers       Date:  2017-01-24

6.  Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.

Authors:  Holger Langhof; Hannes Kahrass; Sören Sievers; Daniel Strech
Journal:  Eur J Hum Genet       Date:  2016-12-21       Impact factor: 4.246

7.  Assessing Researcher Needs for a Virtual Biobank.

Authors:  Jenna van Draanen; Pamela Davidson; Helene Bour-Jordan; LeeAnna Bowman-Carpio; David Boyle; Steve Dubinett; Brian Gardner; Jachael Gardner; Courtney McFall; Dan Mercola; Terry Nakazono; Stephanie Soares; Hubert Stoppler; Margaret Tempero; Scott Vandenberg; Yu Jui Wan; Sarah Dry
Journal:  Biopreserv Biobank       Date:  2016-12-08       Impact factor: 2.300

Review 8.  A critical analysis of cancer biobank practices in relation to biospecimen quality.

Authors:  Amanda Rush; Kevin Spring; Jennifer A Byrne
Journal:  Biophys Rev       Date:  2015-10-22

9.  Recommendations from the international stroke genetics consortium, part 2: biological sample collection and storage.

Authors:  Thomas W K Battey; Valerie Valant; Sylvia Baedorf Kassis; Christina Kourkoulis; Chaeyoung Lee; Christopher D Anderson; Guido J Falcone; Jordi Jimenez-Conde; Israel Fernandez-Cadenas; Guillaume Pare; Tatjana Rundek; Michael L James; Robin Lemmens; Tsong-Hai Lee; Turgut Tatlisumak; Steven J Kittner; Arne Lindgren; Farrah J Mateen; Aaron L Berkowitz; Elizabeth G Holliday; Jennifer Majersik; Jane Maguire; Cathie Sudlow; Jonathan Rosand
Journal:  Stroke       Date:  2014-12-09       Impact factor: 7.914

10.  Perceptions of patients with inflammatory bowel diseases on biobanking.

Authors:  Millie D Long; R Jean Cadigan; Suzanne F Cook; Kaaren Haldeman; Kriste Kuczynski; Robert S Sandler; Christopher F Martin; Wenli Chen; Michael D Kappelman
Journal:  Inflamm Bowel Dis       Date:  2015-01       Impact factor: 5.325

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