Literature DB >> 21190750

Disclosure of individual genetic data to research participants: the debate reconsidered.

Annelien L Bredenoord1, Hester Y Kroes, Edwin Cuppen, Michael Parker, Johannes J M van Delden.   

Abstract

Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more urgent. In this debate two positions can be broadly discerned: a restrictive disclosure policy ('no feedback except life-saving data') and an intermediate policy of qualified disclosure ('feedback if the results meet certain conditions'). We explain both positions and present the principal underlying arguments. We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance between the possible benefits of disclosure and the harms of unduly hindering biomedical research.
Copyright © 2010 Elsevier Ltd. All rights reserved.

Entities:  

Mesh:

Year:  2010        PMID: 21190750     DOI: 10.1016/j.tig.2010.11.004

Source DB:  PubMed          Journal:  Trends Genet        ISSN: 0168-9525            Impact factor:   11.639


  105 in total

1.  The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.

Authors:  R Jean Cadigan; Marsha Michie; Gail Henderson; Arlene M Davis; Laura M Beskow
Journal:  J Empir Res Hum Res Ethics       Date:  2011-12       Impact factor: 1.742

2.  The BIO-PIN paradigm: 'access to' or 'return of' results?

Authors:  Eric Vermeulen; Paul van der Valk; José J M Koevoets; Martina C Cornel; Marjanka K Schmidt
Journal:  Nat Rev Cancer       Date:  2011-11-04       Impact factor: 60.716

3.  Researcher and institutional review board chair perspectives on incidental findings in genomic research.

Authors:  Janet K Williams; Sandra Daack-Hirsch; Martha Driessnack; Nancy Downing; Laura Shinkunas; Debra Brandt; Christian Simon
Journal:  Genet Test Mol Biomarkers       Date:  2012-02-21

Review 4.  Ethics and neuropsychiatric genetics: a review of major issues.

Authors:  Steven K Hoge; Paul S Appelbaum
Journal:  Int J Neuropsychopharmacol       Date:  2012-01-25       Impact factor: 5.176

5.  Whole-genome sequencing in health care. Recommendations of the European Society of Human Genetics.

Authors:  Carla G van El; Martina C Cornel; Pascal Borry; Ros J Hastings; Florence Fellmann; Shirley V Hodgson; Heidi C Howard; Anne Cambon-Thomsen; Bartha M Knoppers; Hanne Meijers-Heijboer; Hans Scheffer; Lisbeth Tranebjaerg; Wybo Dondorp; Guido M W R de Wert
Journal:  Eur J Hum Genet       Date:  2013-06       Impact factor: 4.246

6.  Next-generation sequencing: does the next generation still have a right to an open future?

Authors:  Annelien L Bredenoord; Martine C de Vries; Johannes J M van Delden
Journal:  Nat Rev Genet       Date:  2013-05       Impact factor: 53.242

Review 7.  Incidental findings from clinical genome-wide sequencing: a review.

Authors:  Z Lohn; S Adam; P H Birch; J M Friedman
Journal:  J Genet Couns       Date:  2013-05-26       Impact factor: 2.537

Review 8.  Evolving approaches to the ethical management of genomic data.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun
Journal:  Trends Genet       Date:  2013-02-28       Impact factor: 11.639

9.  Psychiatric genetics researchers' views on offering return of results to individual participants.

Authors:  Kristin M Kostick; Cody Brannan; Stacey Pereira; Gabriel Lázaro-Muñoz
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2018-10-25       Impact factor: 3.568

10.  Genetics specialists' perspectives on disclosure of genomic incidental findings in the clinical setting.

Authors:  Nancy R Downing; Janet K Williams; Sandra Daack-Hirsch; Martha Driessnack; Christian M Simon
Journal:  Patient Educ Couns       Date:  2012-10-12
View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.