Literature DB >> 27599532

Next-Generation Sequencing and the Return of Results.

Bartha Maria Knoppers1, Minh Thu Nguyen1, Karine Sénécal1, Anne Marie Tassé2, Ma'n H Zawati1.   

Abstract

The impact of next-generation sequencing (NGS) on the issue of return of results is defying clear policy guidance and creating international confusion. Limiting ourselves to the return of results revealed by NGS (including incidental findings) in adults, children, family members of deceased individuals, and population studies, we describe and contrast emerging policy positions in Europe, Canada, and the United States. Until there are clear, scientific, and professional standards and practical policy, both researchers and clinicians cannot be faulted for being either hesitant or pressured to return NGS results.
Copyright © 2016 Cold Spring Harbor Laboratory Press; all rights reserved.

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Year:  2016        PMID: 27599532      PMCID: PMC5046689          DOI: 10.1101/cshperspect.a026724

Source DB:  PubMed          Journal:  Cold Spring Harb Perspect Med        ISSN: 2157-1422            Impact factor:   6.915


  45 in total

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Authors:  Paul N Schofield; Janan Eppig; Eva Huala; Martin Hrabe de Angelis; Mark Harvey; Duncan Davidson; Tom Weaver; Steve Brown; Damian Smedley; Nadia Rosenthal; Klaus Schughart; Vassilis Aidinis; Glauco Tocchini-Valentini; John M Hancock
Journal:  Science       Date:  2010-10-29       Impact factor: 47.728

2.  Reporting results from whole-genome and whole-exome sequencing in clinical practice: a proposal for Canada?

Authors:  Ma'n H Zawati; David Parry; Adrian Thorogood; Minh Thu Nguyen; Kym M Boycott; David Rosenblatt; Bartha Maria Knoppers
Journal:  J Med Genet       Date:  2013-09-27       Impact factor: 6.318

3.  Disclosing individual genetic research results to deceased participants' relatives by means of a qualified disclosure policy.

Authors:  Annelien L Bredenoord; Johannes J M van Delden
Journal:  Am J Bioeth       Date:  2012       Impact factor: 11.229

4.  Whole-genome sequencing for optimized patient management.

Authors:  Matthew N Bainbridge; Wojciech Wiszniewski; David R Murdock; Jennifer Friedman; Claudia Gonzaga-Jauregui; Irene Newsham; Jeffrey G Reid; John K Fink; Margaret B Morgan; Marie-Claude Gingras; Donna M Muzny; Linh D Hoang; Shahed Yousaf; James R Lupski; Richard A Gibbs
Journal:  Sci Transl Med       Date:  2011-06-15       Impact factor: 17.956

Review 5.  Diagnostic clinical genome and exome sequencing.

Authors:  Leslie G Biesecker; Robert C Green
Journal:  N Engl J Med       Date:  2014-06-19       Impact factor: 91.245

6.  Whole-genome sequencing in newborn screening programs.

Authors:  Bartha M Knoppers; Karine Sénécal; Pascal Borry; Denise Avard
Journal:  Sci Transl Med       Date:  2014-03-26       Impact factor: 17.956

7.  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

Review 8.  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

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.  Guidelines for diagnostic next-generation sequencing.

Authors:  Gert Matthijs; Erika Souche; Mariëlle Alders; Anniek Corveleyn; Sebastian Eck; Ilse Feenstra; Valérie Race; Erik Sistermans; Marc Sturm; Marjan Weiss; Helger Yntema; Egbert Bakker; Hans Scheffer; Peter Bauer
Journal:  Eur J Hum Genet       Date:  2015-10-28       Impact factor: 4.246

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  4 in total

1.  Privacy and ethical challenges in next-generation sequencing.

Authors:  Nicole Martinez-Martin; David Magnus
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Review 2.  Next generation sequencing: clinical applications in solid tumours.

Authors:  Leonhard Müllauer
Journal:  Memo       Date:  2017-11-03

Review 3.  Points-to-consider on the return of results in epigenetic research.

Authors:  Stephanie O M Dyke; Katie M Saulnier; Charles Dupras; Amy P Webster; Karen Maschke; Mark Rothstein; Reiner Siebert; Jörn Walter; Stephan Beck; Tomi Pastinen; Yann Joly
Journal:  Genome Med       Date:  2019-05-23       Impact factor: 11.117

4.  Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.

Authors:  Michael J S Beauvais; Adrian M Thorogood; Michael J Szego; Karine Sénécal; M'an H Zawati; Bartha Maria Knoppers
Journal:  Front Genet       Date:  2021-03-31       Impact factor: 4.599

  4 in total

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