Literature DB >> 23728783

Views of genetics health professionals on the return of genomic results.

Megan E Grove1, Maya N Wolpert, Mildred K Cho, Sandra Soo-Jin Lee, Kelly E Ormond.   

Abstract

As exome and whole genome sequencing become clinically available, the potential to receive a large number of clinically relevant but incidental results is a significant challenge in the provision of genomic counseling. We conducted three focus groups of a total of 35 individuals who were members of ASHG and/or NSGC, assessing views towards the return of genomic results. Participants stressed that patient autonomy was primary. There was consensus that a mechanism to return results to the healthcare provider, rather than patient, and to streamline integration into the electronic health record would ensure these results had the maximal impact on patient management. All three focus groups agreed that pharmacogenomic results were reasonable to return and that they were not felt to be stigmatizing. With regard to the return of medically relevant results, there was much debate. Participants had difficulty in consistently assigning specific diseases to 'bins' that were considered obligatory versus optional for disclosure. Consensus was reached regarding the importance of informed consent and pretest counseling visits to clarify what the return of results process would entail. Evidence based professional guidelines should continue to be developed and regularly revised to assist in consistently and appropriately providing genomic results to patients.

Entities:  

Mesh:

Year:  2013        PMID: 23728783      PMCID: PMC3809025          DOI: 10.1007/s10897-013-9611-5

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  26 in total

1.  Disclosing pathogenic genetic variants to research participants: quantifying an emerging ethical responsibility.

Authors:  Christopher A Cassa; Sarah K Savage; Patrick L Taylor; Robert C Green; Amy L McGuire; Kenneth D Mandl
Journal:  Genome Res       Date:  2012-01-06       Impact factor: 9.043

2.  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

3.  Offering individual genetic research results: context matters.

Authors:  Laura M Beskow; Wylie Burke
Journal:  Sci Transl Med       Date:  2010-06-30       Impact factor: 17.956

4.  Researcher perspectives on disclosure of incidental findings in genetic research.

Authors:  Meredith C Meacham; Helene Starks; Wylie Burke; Kelly Edwards
Journal:  J Empir Res Hum Res Ethics       Date:  2010-09       Impact factor: 1.742

5.  Communication of biobanks' research results: what do (potential) participants want?

Authors:  Tineke M Meulenkamp; Sjef K Gevers; Jasper A Bovenberg; Gerard H Koppelman; Astrid van Hylckama Vlieg; Ellen M A Smets
Journal:  Am J Med Genet A       Date:  2010-10       Impact factor: 2.802

Review 6.  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

7.  Taxonomizing, sizing, and overcoming the incidentalome.

Authors:  Isaac S Kohane; Michael Hsing; Sek Won Kong
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

8.  The legal risks of returning results of genomics research.

Authors:  Ellen Wright Clayton; Amy L McGuire
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

9.  Exploring concordance and discordance for return of incidental findings from clinical sequencing.

Authors:  Robert C Green; Jonathan S Berg; Gerard T Berry; Leslie G Biesecker; David P Dimmock; James P Evans; Wayne W Grody; Madhuri R Hegde; Sarah Kalia; Bruce R Korf; Ian Krantz; Amy L McGuire; David T Miller; Michael F Murray; Robert L Nussbaum; Sharon E Plon; Heidi L Rehm; Howard J Jacob
Journal:  Genet Med       Date:  2012-03-15       Impact factor: 8.822

10.  Early Diagnosis of Werner's Syndrome Using Exome-Wide Sequencing in a Single, Atypical Patient.

Authors:  Eleanor Raffan; Liam A Hurst; Saeed Al Turki; Gillian Carpenter; Carol Scott; Allan Daly; Alison Coffey; Sanjeev Bhaskar; Eleanor Howard; Naz Khan; Helen Kingston; Aarno Palotie; David B Savage; Mark O'Driscoll; Claire Smith; Stephen O'Rahilly; Inês Barroso; Robert K Semple
Journal:  Front Endocrinol (Lausanne)       Date:  2011-03-29       Impact factor: 5.555

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  21 in total

1.  Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age.

Authors:  K A Kaphingst; J Ivanovich; B B Biesecker; R Dresser; J Seo; L G Dressler; P J Goodfellow; M S Goodman
Journal:  Clin Genet       Date:  2015-05-05       Impact factor: 4.438

2.  Non-invasive prenatal testing: UK genetic counselors' experiences and perspectives.

Authors:  Elizabeth Alexander; Susan Kelly; Lauren Kerzin-Storrar
Journal:  J Genet Couns       Date:  2014-10-15       Impact factor: 2.537

3.  Reporting Incidental Findings in Clinical Whole Exome Sequencing: Incorporation of the 2013 ACMG Recommendations into Current Practices of Genetic Counseling.

Authors:  Lacey A Smith; Jessica Douglas; Alicia A Braxton; Kate Kramer
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

4.  Genetic Counseling in the Era of Genomics: What's all the Fuss about?

Authors:  Gemma R Brett; Ella J Wilkins; Emma T Creed; Kirsty West; Anna Jarmolowicz; Giulia M Valente; Yael Prawer; Elly Lynch; Ivan Macciocca
Journal:  J Genet Couns       Date:  2018-01-24       Impact factor: 2.537

Review 5.  A primer to clinical genome sequencing.

Authors:  James R Priest
Journal:  Curr Opin Pediatr       Date:  2017-10       Impact factor: 2.856

6.  Effect of Public Deliberation on Attitudes toward Return of Secondary Results in Genomic Sequencing.

Authors:  Michele C Gornick; Aaron M Scherer; Erica J Sutton; Kerry A Ryan; Nicole L Exe; Ming Li; Wendy R Uhlmann; Scott Y H Kim; J Scott Roberts; Raymond G De Vries
Journal:  J Genet Couns       Date:  2016-06-16       Impact factor: 2.537

7.  Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.

Authors:  Julia Wynn; Josue Martinez; Jimmy Duong; Yuan Zhang; Jo Phelan; Abby Fyer; Robert Klitzman; Paul S Appelbaum; Wendy K Chung
Journal:  J Genet Couns       Date:  2015-01-17       Impact factor: 2.537

8.  Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice.

Authors:  Kerry A Ryan; Raymond G De Vries; Wendy R Uhlmann; J Scott Roberts; Michele C Gornick
Journal:  J Genet Couns       Date:  2017-03-29       Impact factor: 2.537

9.  Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing.

Authors:  Joon-Ho Yu; Tanya M Harrell; Seema M Jamal; Holly K Tabor; Michael J Bamshad
Journal:  Am J Hum Genet       Date:  2014-06-26       Impact factor: 11.025

10.  Translating personalized medicine using new genetic technologies in clinical practice: the ethical issues.

Authors:  Kelly E Ormond; Mildred K Cho
Journal:  Per Med       Date:  2014       Impact factor: 2.512

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