Literature DB >> 30358063

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

Kristin M Kostick1, Cody Brannan1, Stacey Pereira1, Gabriel Lázaro-Muñoz1.   

Abstract

In the middle of growing consensus that genomics researchers should offer to return clinically valid, medically relevant, and medically actionable findings identified in the course of research, psychiatric genetics researchers face new challenges. As they uncover the genetic architecture of psychiatric disorders through genome-wide association studies and integrate whole genome and whole exome sequencing to their research, there is a pressing need for examining these researchers' views regarding the return of results (RoR) and the unique challenges for offering RoR from psychiatric genetics research. Based on qualitative interviews with 39 psychiatric genetics researchers from different countries operating at the forefront of their field, we provide an insider's view of researchers' practices regarding RoR and the most contentious issues in psychiatry researchers' decision-making around RoR, including what are the strongest ethical, scientific, and practical arguments for and against offering RoR from this research. Notably, findings suggest that psychiatric genetics researchers (85%) overwhelmingly favor offering RoR of at least some findings, but only 22% of researchers are returning results. Researchers identified a number of scientific and practical concerns about RoR, and about how to return results in a responsible way to patients diagnosed with a severe psychiatric disorder. Furthermore, findings help highlight areas for further discussion and resolution of conflicts in the practice of RoR in psychiatric genetics research. As the pace of discovery in psychiatric genetics continues to surge, resolution of these uncertainties gains greater urgency to avoid ethical pitfalls and to maximize the positive impact of RoR.
© 2018 Wiley Periodicals, Inc.

Entities:  

Keywords:  attitudes; empirical; genetic; psychiatry; qualitative

Mesh:

Year:  2018        PMID: 30358063      PMCID: PMC6483893          DOI: 10.1002/ajmg.b.32682

Source DB:  PubMed          Journal:  Am J Med Genet B Neuropsychiatr Genet        ISSN: 1552-4841            Impact factor:   3.568


  45 in total

1.  Informing study participants of research results: an ethical imperative.

Authors:  Conrad V Fernandez; Eric Kodish; Charles Weijer
Journal:  IRB       Date:  2003 May-Jun

Review 2.  Five years of GWAS discovery.

Authors:  Peter M Visscher; Matthew A Brown; Mark I McCarthy; Jian Yang
Journal:  Am J Hum Genet       Date:  2012-01-13       Impact factor: 11.025

3.  A new initiative on precision medicine.

Authors:  Francis S Collins; Harold Varmus
Journal:  N Engl J Med       Date:  2015-01-30       Impact factor: 91.245

Review 4.  Personal utility in genomic testing: a systematic literature review.

Authors:  Jennefer N Kohler; Erin Turbitt; Barbara B Biesecker
Journal:  Eur J Hum Genet       Date:  2017-03-15       Impact factor: 4.246

Review 5.  The psychological impact of predictive genetic testing for Huntington's disease: a systematic review of the literature.

Authors:  S Crozier; N Robertson; M Dale
Journal:  J Genet Couns       Date:  2014-09-20       Impact factor: 2.537

6.  Schizophrenia genetics comes of age.

Authors:  Anna C Need; David B Goldstein
Journal:  Neuron       Date:  2014-08-20       Impact factor: 17.173

7.  Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.

Authors:  Ebony B Bookman; Aleisha A Langehorne; John H Eckfeldt; Kathleen C Glass; Gail P Jarvik; Michael Klag; Greg Koski; Arno Motulsky; Benjamin Wilfond; Teri A Manolio; Richard R Fabsitz; Russell V Luepker
Journal:  Am J Med Genet A       Date:  2006-05-15       Impact factor: 2.802

8.  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

9.  Emotional distress following genetic testing for hereditary breast and ovarian cancer: a meta-analytic review.

Authors:  Jada G Hamilton; Marci Lobel; Anne Moyer
Journal:  Health Psychol       Date:  2009-07       Impact factor: 4.267

10.  ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing.

Authors:  Robert C Green; Jonathan S Berg; Wayne W Grody; Sarah S Kalia; Bruce R Korf; Christa L Martin; Amy L McGuire; Robert L Nussbaum; Julianne M O'Daniel; Kelly E Ormond; Heidi L Rehm; Michael S Watson; Marc S Williams; Leslie G Biesecker
Journal:  Genet Med       Date:  2013-06-20       Impact factor: 8.822

View more
  8 in total

1.  Ethics of returning children's individual research findings: from principles to practice.

Authors:  Gert-Jan Vanaken; Ilse Noens; Herbert Roeyers; Lotte van Esch; Petra Warreyn; Jean Steyaert; Kristien Hens
Journal:  Eur Child Adolesc Psychiatry       Date:  2020-07-26       Impact factor: 4.785

Review 2.  International Society of Psychiatric Genetics Ethics Committee: Issues facing us.

Authors:  Gabriel Lázaro-Muñoz; Maya Sabatello; Laura Huckins; Holly Peay; Franziska Degenhardt; Bettina Meiser; Todd Lencz; Takahiro Soda; Anna Docherty; David Crepaz-Keay; Jehannine Austin; Roseann E Peterson; Lea K Davis
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2019-05-23       Impact factor: 3.568

3.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

Review 4.  Views on genomic research result delivery methods and informed consent: a review.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Madeleine J Murtagh
Journal:  Per Med       Date:  2021-04-06       Impact factor: 2.512

5.  Avoiding "toxic knowledge": the importance of framing personalized risk information in clinical decision-making.

Authors:  Kristin M Kostick; J S Blumenthal-Barby
Journal:  Per Med       Date:  2021-02-22       Impact factor: 2.512

6.  "It's all about delivery": researchers and health professionals' views on the moral challenges of accessing neurobiological information in the context of psychosis.

Authors:  Paolo Corsico
Journal:  BMC Med Ethics       Date:  2021-02-08       Impact factor: 2.652

7.  KCNQ1 and Long QT Syndrome in 1/45 Amish: The Road From Identification to Implementation of Culturally Appropriate Precision Medicine.

Authors:  Elizabeth A Streeten; Vincent Y See; Linda B J Jeng; Kristin A Maloney; Megan Lynch; Andrew M Glazer; Tao Yang; Dan Roden; Toni I Pollin; Melanie Daue; Kathleen A Ryan; Cristopher Van Hout; Nehal Gosalia; Claudia Gonzaga-Jauregui; Aris Economides; James A Perry; Jeffrey O'Connell; Amber Beitelshees; Kathleen Palmer; Braxton D Mitchell; Alan R Shuldiner
Journal:  Circ Genom Precis Med       Date:  2020-11-03

8.  Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.

Authors:  Gabriel Lázaro-Muñoz; Laura Torgerson; Hadley Stevens Smith; Stacey Pereira
Journal:  Eur J Hum Genet       Date:  2020-10-03       Impact factor: 4.246

  8 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.