Literature DB >> 22344229

International normative perspectives on the return of individual research results and incidental findings in genomic biobanks.

Ma'n H Zawati1, Bartha Maria Knoppers.   

Abstract

Managers of genomic biobanks constantly face ethical and legal challenges ranging from issues associated with the informed consent process to procedural concerns related to access by researchers. Yet, with the availability of next-generation sequencing technologies, one topic is emerging as the focus of ongoing debate: the return of individual research results and incidental findings to participants. This article examines this topic from an international perspective, where policies and guidelines discussing the matter in the context of genomic biobanks and genomic research are analyzed and commented. This approach aims to highlight the shortcomings of these international norms, mainly the danger arising from both the therapeutic misconception and the conflation of research results with incidental findings. This article suggests some elements to consider in order to complement available guidance at the international level.

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Year:  2012        PMID: 22344229     DOI: 10.1038/gim.2012.13

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  28 in total

Review 1.  Return of genetic testing results in the era of whole-genome sequencing.

Authors:  Bartha Maria Knoppers; Ma'n H Zawati; Karine Sénécal
Journal:  Nat Rev Genet       Date:  2015-08-04       Impact factor: 53.242

Review 2.  Return of individual research results and incidental findings: facing the challenges of translational science.

Authors:  Susan M Wolf
Journal:  Annu Rev Genomics Hum Genet       Date:  2013-07-15       Impact factor: 8.929

3.  Secondary variants--in defense of a more fitting term in the incidental findings debate.

Authors:  Gabrielle M Christenhusz; Koenraad Devriendt; Kris Dierickx
Journal:  Eur J Hum Genet       Date:  2013-05-22       Impact factor: 4.246

4.  Predictive Analytics and the Return of "Research" Information to Participants.

Authors:  Shengzhi Wang; Ellen E Lee; Benjamin Zywicki; Ho-Cheol Kim; Dilip Jeste; Camille Nebeker
Journal:  Appl Hum Factors Ergon Conf       Date:  2020-07-10

5.  Reporting actionable research results: shared secrets can save lives.

Authors:  Lawrence E Hunter; Christian Hopfer; Sharon F Terry; Marilyn E Coors
Journal:  Sci Transl Med       Date:  2012-07-18       Impact factor: 17.956

6.  International Policies on Sharing Genomic Research Results with Relatives: Approaches to Balancing Privacy with Access.

Authors:  Rebecca Branum; Susan M Wolf
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

7.  Short read (next-generation) sequencing: a tutorial with cardiomyopathy diagnostics as an exemplar.

Authors:  Jaya Punetha; Eric P Hoffman
Journal:  Circ Cardiovasc Genet       Date:  2013-07-14

8.  Models of consent to return of incidental findings in genomic research.

Authors:  Paul S Appelbaum; Erik Parens; Cameron R Waldman; Robert Klitzman; Abby Fyer; Josue Martinez; W Nicholson Price; Wendy K Chung
Journal:  Hastings Cent Rep       Date:  2014-06-11       Impact factor: 2.683

9.  Incidental variants are critical for genomics.

Authors:  Leslie G Biesecker
Journal:  Am J Hum Genet       Date:  2013-05-02       Impact factor: 11.025

10.  Emerging issues in paediatric health research consent forms in Canada: working towards best practices.

Authors:  Edward S Dove; Denise Avard; Lee Black; Bartha M Knoppers
Journal:  BMC Med Ethics       Date:  2013-01-30       Impact factor: 2.652

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