Literature DB >> 26479561

Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

Gloria M Petersen1, Brian Van Ness2.   

Abstract

Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families.
© 2015 American Society of Law, Medicine & Ethics, Inc.

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Year:  2015        PMID: 26479561      PMCID: PMC4617601          DOI: 10.1111/jlme.12294

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  12 in total

1.  What is a biobank? Differing definitions among biobank stakeholders.

Authors:  D M Shaw; B S Elger; F Colledge
Journal:  Clin Genet       Date:  2013-10-16       Impact factor: 4.438

2.  Stewardship practices of U.S. biobanks.

Authors:  Gail E Henderson; Teresa P Edwards; R Jean Cadigan; Arlene M Davis; Catherine Zimmer; Ian Conlon; Bryan J Weiner
Journal:  Sci Transl Med       Date:  2013-12-11       Impact factor: 17.956

Review 3.  Managing incidental findings in human subjects research: analysis and recommendations.

Authors:  Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond
Journal:  J Law Med Ethics       Date:  2008       Impact factor: 1.718

4.  Return of individual research results and incidental findings in the clinical trials cooperative group setting.

Authors:  Michael Ferriere; Brian Van Ness
Journal:  Genet Med       Date:  2012-03-01       Impact factor: 8.822

5.  Managing incidental findings and research results in genomic research involving biobanks and archived data sets.

Authors:  Susan M Wolf; Brittney N Crock; Brian Van Ness; Frances Lawrenz; Jeffrey P Kahn; Laura M Beskow; Mildred K Cho; Michael F Christman; Robert C Green; Ralph Hall; Judy Illes; Moira Keane; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Bonnie Leroy; Karen J Maschke; William McGeveran; Pilar Ossorio; Lisa S Parker; Gloria M Petersen; Henry S Richardson; Joan A Scott; Sharon F Terry; Benjamin S Wilfond; Wendy A Wolf
Journal:  Genet Med       Date:  2012-04       Impact factor: 8.822

6.  Return of results in genomic biobank research: ethics matters.

Authors:  Susan M Wolf
Journal:  Genet Med       Date:  2013-02       Impact factor: 8.822

7.  Researchers' views on return of incidental genomic research results: qualitative and quantitative findings.

Authors:  Robert Klitzman; Paul S Appelbaum; Abby Fyer; Josue Martinez; Brigitte Buquez; Julia Wynn; Cameron R Waldman; Jo Phelan; Erik Parens; Wendy K Chung
Journal:  Genet Med       Date:  2013-06-27       Impact factor: 8.822

8.  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

9.  Experiences and attitudes of genome investigators regarding return of individual genetic test results.

Authors:  Rachel B Ramoni; Amy L McGuire; Jill Oliver Robinson; Debra S Morley; Sharon E Plon; Steven Joffe
Journal:  Genet Med       Date:  2013-05-02       Impact factor: 8.822

Review 10.  Funding considerations for the disclosure of genetic incidental findings in biobank research.

Authors:  L Black; D Avard; M H Zawati; B M Knoppers; J Hébert; G Sauvageau
Journal:  Clin Genet       Date:  2013-06-10       Impact factor: 4.438

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  3 in total

1.  Returning Results: Let's Be Honest!

Authors:  Bernice S Elger; Eva De Clercq
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-24

2.  Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.

Authors:  Muyiwa Adigun; Babatunde Ojebuyi; Joshua Akinyemi; Kolawole Wahab; Albert Akpalu; Fred S Sarfo; Lukman F Owolabi; Rabiu Musbahu; Abiodun Bello; Reginald Obiako; Mayowa Ogunronbi; Michelle Nichols; Carolyn Jenkins; Ayodele Jegede; Rajesh Kalaria; Mayowa Owolabi; Bruce Ovbiagele; Oyedunni Arulogun; Rufus Akinyemi
Journal:  Theory Pract Legis       Date:  2022-01-31

3.  Navigating social and ethical challenges of biobanking for human microbiome research.

Authors:  Kim H Chuong; David M Hwang; D Elizabeth Tullis; Valerie J Waters; Yvonne C W Yau; David S Guttman; Kieran C O'Doherty
Journal:  BMC Med Ethics       Date:  2017-01-11       Impact factor: 2.652

  3 in total

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