Literature DB >> 22199990

You never call, you never write: why return of 'omic' results to research participants is both a good idea and a moral imperative.

Misha Angrist1.   

Abstract

The rapid emergence of whole-genome and whole-exome sequencing of research participants has helped to revive the debate about whether genetic and other 'omic' data should be returned to research participants, and if so, which data, under what circumstances and by whom. While partial disclosure of such data has been justified in cases where participants' lives and health are threatened, full disclosure appears to remain beyond the pale for most researchers and bioethicists. I argue that it should not be and that the objections to full disclosure short-sightedly favor near-term considerations over long-term benefits. Return of genomic data to those who want it, even if a difficult undertaking and even if the meaning of the data is unclear, engages participants in science and the research enterprise, and positions them to be better stewards of their own health and wellbeing.

Entities:  

Year:  2011        PMID: 22199990      PMCID: PMC3243914          DOI: 10.2217/pme.11.62

Source DB:  PubMed          Journal:  Per Med        ISSN: 1741-0541            Impact factor:   2.512


  70 in total

1.  Genomics: launching a revolution in medicine.

Authors:  E S Lander
Journal:  J Law Med Ethics       Date:  2000       Impact factor: 1.718

2.  Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.

Authors:  Paul Wicks; Timothy E Vaughan; Michael P Massagli; James Heywood
Journal:  Nat Biotechnol       Date:  2011-04-24       Impact factor: 54.908

Review 3.  Disclosure of individual genetic data to research participants: the debate reconsidered.

Authors:  Annelien L Bredenoord; Hester Y Kroes; Edwin Cuppen; Michael Parker; Johannes J M van Delden
Journal:  Trends Genet       Date:  2010-12-27       Impact factor: 11.639

Review 4.  Utility and limitations of genetic testing and information.

Authors:  Aoife N Bradley
Journal:  Nurs Stand       Date:  2005 Oct 12-18

Review 5.  A literature review of the psychological impact of genetic testing on breast cancer patients.

Authors:  Kathryn J Schlich-Bakker; Herman F J ten Kroode; Margreet G E M Ausems
Journal:  Patient Educ Couns       Date:  2005-10-19

6.  Whole-exome-sequencing-based discovery of human FADD deficiency.

Authors:  Alexandre Bolze; Minji Byun; David McDonald; Neil V Morgan; Avinash Abhyankar; Lakshmanane Premkumar; Anne Puel; Chris M Bacon; Frédéric Rieux-Laucat; Ki Pang; Alison Britland; Laurent Abel; Andrew Cant; Eamonn R Maher; Stefan J Riedl; Sophie Hambleton; Jean-Laurent Casanova
Journal:  Am J Hum Genet       Date:  2010-11-25       Impact factor: 11.025

7.  Power to the people: participant ownership of clinical trial data.

Authors:  Sharon F Terry; Patrick F Terry
Journal:  Sci Transl Med       Date:  2011-02-09       Impact factor: 17.956

8.  The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study.

Authors:  Sato Ashida; Laura M Koehly; J Scott Roberts; Clara A Chen; Susan Hiraki; Robert C Green
Journal:  Eur J Hum Genet       Date:  2010-07-28       Impact factor: 4.246

9.  A timely arrival for genomic medicine.

Authors:  Alan N Mayer; David P Dimmock; Marjorie J Arca; David P Bick; James W Verbsky; Elizabeth A Worthey; Howard J Jacob; David A Margolis
Journal:  Genet Med       Date:  2011-03       Impact factor: 8.822

Review 10.  Toxic ignorance and right-to-know in biomonitoring results communication: a survey of scientists and study participants.

Authors:  Rachel Morello-Frosch; Julia Green Brody; Phil Brown; Rebecca Gasior Altman; Ruthann A Rudel; Carla Pérez
Journal:  Environ Health       Date:  2009-02-28       Impact factor: 5.984

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  22 in total

1.  Seeking Genomic Knowledge: The Case for Clinical Restraint.

Authors:  Wylie Burke; Susan Brown Trinidad; Ellen Wright Clayton
Journal:  Hastings Law J       Date:  2013-08-01

2.  "Use it or lose it" as an alternative approach to protect genetic privacy in personalized medicine.

Authors:  Jennifer K Wagner; Jessica T Mozersky; Reed E Pyeritz
Journal:  Urol Oncol       Date:  2014-02       Impact factor: 3.498

3.  Return of results: ethical and legal distinctions between research and clinical care.

Authors:  Wylie Burke; Barbara J Evans; Gail P Jarvik
Journal:  Am J Med Genet C Semin Med Genet       Date:  2014-03-10       Impact factor: 3.908

Review 4.  Mind the gap: resources required to receive, process and interpret research-returned whole genome data.

Authors:  Dana C Crawford; Jessica N Cooke Bailey; Farren B S Briggs
Journal:  Hum Genet       Date:  2019-06-03       Impact factor: 4.132

Review 5.  Living laboratory: whole-genome sequencing as a learning healthcare enterprise.

Authors:  M Angrist; L Jamal
Journal:  Clin Genet       Date:  2014-09-06       Impact factor: 4.438

6.  Not the End of the Odyssey: Parental Perceptions of Whole Exome Sequencing (WES) in Pediatric Undiagnosed Disorders.

Authors:  Allyn McConkie Rosell; Loren D M Pena; Kelly Schoch; Rebecca Spillmann; Jennifer Sullivan; Stephen R Hooper; Yong-Hui Jiang; Nicolas Mathey-Andrews; David B Goldstein; Vandana Shashi
Journal:  J Genet Couns       Date:  2016-02-12       Impact factor: 2.537

7.  Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations.

Authors:  Claustre Pont-Sunyer; Susan Bressman; Deborah Raymond; Amanda Glickman; Eduardo Tolosa; Rachel Saunders-Pullman
Journal:  Mov Disord       Date:  2015-05-07       Impact factor: 10.338

Review 8.  Delivering systems pharmacogenomics towards precision medicine through mathematics.

Authors:  Yaqun Wang; Ningtao Wang; Jianxin Wang; Zhong Wang; Rongling Wu
Journal:  Adv Drug Deliv Rev       Date:  2013-03-22       Impact factor: 15.470

9.  Parental attitudes, values, and beliefs toward the return of results from exome sequencing in children.

Authors:  J C Sapp; D Dong; C Stark; L E Ivey; G Hooker; L G Biesecker; B B Biesecker
Journal:  Clin Genet       Date:  2013-09-20       Impact factor: 4.438

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

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