Literature DB >> 28306398

Returning Results: Let's Be Honest!

Bernice S Elger1,2, Eva De Clercq1.   

Abstract

Biobank research has the potential to return results that could have beneficial and even life-saving consequences for participants. This possibility raises some important questions, not only about the ethical duty to return results within a research setting, but also about participants' right to refuse results and researchers' responsibility to respect that choice. This article argues in favor of adopting a return-of-results policy that limits participants' ability to refuse clinically relevant and actionable results. We state that biobanks should allow donors only if they are aware of and agree to this return policy. If they do not agree to this, they retain the option not to participate in the biobank research. The aim of this article is to discuss the practical and ethical reasons in favor of this return-of-result policy and, thus, to underline the importance of "honesty" in biobanking regulations.

Entities:  

Keywords:  biobanking; honesty; policy; refusal; return of results

Mesh:

Year:  2017        PMID: 28306398      PMCID: PMC5488257          DOI: 10.1089/gtmb.2016.0395

Source DB:  PubMed          Journal:  Genet Test Mol Biomarkers        ISSN: 1945-0257


  58 in total

1.  Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.

Authors:  Carmen Radecki Breitkopf; Gloria M Petersen; Susan M Wolf; Kari G Chaffee; Marguerite E Robinson; Deborah R Gordon; Noralane M Lindor; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

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

Authors:  Gloria M Petersen; Brian Van Ness
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

3.  National survey and community advisory board development for a bipolar disorder biobank.

Authors:  Mark A Frye; Allen Doederlein; Barbara Koenig; Susan L McElroy; Malik Nassan; Lisa R Seymour; Joanna M Biernacka; Allen S Daniels
Journal:  Bipolar Disord       Date:  2015-08-20       Impact factor: 6.744

4.  "Still Rather Hazy at Present": Citizens' and Physicians' Views on Returning Results from Biobank Research Using Broad Consent.

Authors:  Gaia Barazzetti; Samuele Cavalli; Lazare Benaroyo; Alain Kaufmann
Journal:  Genet Test Mol Biomarkers       Date:  2017-02-08

5.  The emergence of an ethical duty to disclose genetic research results: international perspectives.

Authors:  Bartha Maria Knoppers; Yann Joly; Jacques Simard; Francine Durocher
Journal:  Eur J Hum Genet       Date:  2006-07-26       Impact factor: 4.246

6.  Allocation of Resources to Communication of Research Result Summaries.

Authors:  Julie E Richards; Emmi Bane; Stephanie M Fullerton; Evette J Ludman; Gail Jarvik
Journal:  J Empir Res Hum Res Ethics       Date:  2016-09-19       Impact factor: 1.742

7.  Return of research results from genomic biobanks: cost matters.

Authors:  Marianna J Bledsoe; Ellen Wright Clayton; Amy L McGuire; William E Grizzle; P Pearl O'Rourke; Nikolajs Zeps
Journal:  Genet Med       Date:  2012-08-30       Impact factor: 8.822

8.  Community engagement for big epidemiology: deliberative democracy as a tool.

Authors:  Rebekah E McWhirter; Christine R Critchley; Dianne Nicol; Don Chalmers; Tess Whitton; Margaret Otlowski; Michael M Burgess; Joanne L Dickinson
Journal:  J Pers Med       Date:  2014-11-20

9.  Translation of research discoveries to clinical care in arrhythmogenic right ventricular cardiomyopathy in Newfoundland and Labrador: lessons for health policy in genetic disease.

Authors:  Kathy Hodgkinson; Elizabeth Dicks; Sean Connors; Terry-Lynn Young; Patrick Parfrey; Daryl Pullman
Journal:  Genet Med       Date:  2009-12       Impact factor: 8.822

10.  Is gene discovery research or diagnosis?

Authors:  Mark E Samuels; Andrew Orr; Duane L Guernsey; Kent Dooley; Christie Riddell; Kathy Hodgkinson; Mark Ludman; Daryl Pullman
Journal:  Genet Med       Date:  2008-06       Impact factor: 8.822

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