Literature DB >> 20381895

Personal genome research : what should the participant be told?

Amy L McGuire1, James R Lupski.   

Abstract

Should the results of whole genome sequencing research be disclosed to participants, in particular when the results have uncertain or indeterminate phenotypic consequences? This controversial question is considered in light of one author's (J.L.) experience as a geneticist who recently had his own genome sequenced. Copyright 2010 Elsevier Ltd. All rights reserved.

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Year:  2010        PMID： 20381895      PMCID： PMC2868334          DOI： 10.1016/j.tig.2009.12.007

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


  12 in total

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Authors:  Ellen Wright Clayton; Lainie Friedman Ross
Journal:  JAMA       Date:  2006-01-04       Impact factor: 56.272

2.  Medicine. Reestablishing the researcher-patient compact.

Authors:  Isaac S Kohane; Kenneth D Mandl; Patrick L Taylor; Ingrid A Holm; Daniel J Nigrin; Louis M Kunkel
Journal:  Science       Date:  2007-05-11       Impact factor: 47.728

3.  Don't throw the baby out with the bathwater: enabling a bottom-up approach in genome-wide association studies.

Authors:  Sean E McGuire; Amy L McGuire
Journal:  Genome Res       Date:  2008-11       Impact factor: 9.043

4.  The complete genome of an individual by massively parallel DNA sequencing.

Authors:  David A Wheeler; Maithreyan Srinivasan; Michael Egholm; Yufeng Shen; Lei Chen; Amy McGuire; Wen He; Yi-Ju Chen; Vinod Makhijani; G Thomas Roth; Xavier Gomes; Karrie Tartaro; Faheem Niazi; Cynthia L Turcotte; Gerard P Irzyk; James R Lupski; Craig Chinault; Xing-zhi Song; Yue Liu; Ye Yuan; Lynne Nazareth; Xiang Qin; Donna M Muzny; Marcel Margulies; George M Weinstock; Richard A Gibbs; Jonathan M Rothberg
Journal:  Nature       Date:  2008-04-17       Impact factor: 49.962

Review 5.  Cascade effects of medical technology.

Authors:  Richard A Deyo
Journal:  Annu Rev Public Health       Date:  2001-10-25       Impact factor: 21.981

6.  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

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

8.  Human genome sequencing using unchained base reads on self-assembling DNA nanoarrays.

Authors:  Radoje Drmanac; Andrew B Sparks; Matthew J Callow; Aaron L Halpern; Norman L Burns; Bahram G Kermani; Paolo Carnevali; Igor Nazarenko; Geoffrey B Nilsen; George Yeung; Fredrik Dahl; Andres Fernandez; Bryan Staker; Krishna P Pant; Jonathan Baccash; Adam P Borcherding; Anushka Brownley; Ryan Cedeno; Linsu Chen; Dan Chernikoff; Alex Cheung; Razvan Chirita; Benjamin Curson; Jessica C Ebert; Coleen R Hacker; Robert Hartlage; Brian Hauser; Steve Huang; Yuan Jiang; Vitali Karpinchyk; Mark Koenig; Calvin Kong; Tom Landers; Catherine Le; Jia Liu; Celeste E McBride; Matt Morenzoni; Robert E Morey; Karl Mutch; Helena Perazich; Kimberly Perry; Brock A Peters; Joe Peterson; Charit L Pethiyagoda; Kaliprasad Pothuraju; Claudia Richter; Abraham M Rosenbaum; Shaunak Roy; Jay Shafto; Uladzislau Sharanhovich; Karen W Shannon; Conrad G Sheppy; Michel Sun; Joseph V Thakuria; Anne Tran; Dylan Vu; Alexander Wait Zaranek; Xiaodi Wu; Snezana Drmanac; Arnold R Oliphant; William C Banyai; Bruce Martin; Dennis G Ballinger; George M Church; Clifford A Reid
Journal:  Science       Date:  2009-11-05       Impact factor: 47.728

9.  Communicating the results of clinical research to participants: attitudes, practices, and future directions.

Authors:  David I Shalowitz; Franklin G Miller
Journal:  PLoS Med       Date:  2008-05-13       Impact factor: 11.069

10.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822
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  32 in total

1.  Prenatal whole genome sequencing: just because we can, should we?

Authors:  Greer Donley; Sara Chandros Hull; Benjamin E Berkman
Journal:  Hastings Cent Rep       Date:  2012-06-20       Impact factor: 2.683

2.  Informed consent for whole genome sequencing: a qualitative analysis of participant expectations and perceptions of risks, benefits, and harms.

Authors:  Holly K Tabor; Jacquie Stock; Tracy Brazg; Margaret J McMillin; Karin M Dent; Joon-Ho Yu; Jay Shendure; Michael J Bamshad
Journal:  Am J Med Genet A       Date:  2012-04-24       Impact factor: 2.802

Review 3.  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

4.  Three clinical experiences with SNP array results consistent with parental incest: a narrative with lessons learned.

Authors:  Benjamin M Helm; Katherine Langley; Brooke Spangler; Samantha Vergano
Journal:  J Genet Couns       Date:  2013-11-13       Impact factor: 2.537

Review 5.  Population biobanks and returning individual research results: mission impossible or new directions?

Authors:  Susan E Wallace; Alastair Kent
Journal:  Hum Genet       Date:  2011-06-05       Impact factor: 4.132

6.  Informed Choice in Direct-to-Consumer Genetic Testing for Alzheimer and Other Diseases: Lessons from Two Cases.

Authors:  Donna A Messner
Journal:  New Genet Soc       Date:  2011

Review 7.  Disclosure of incidental findings from next-generation sequencing in pediatric genomic research.

Authors:  Ruqayyah Abdul-Karim; Benjamin E Berkman; David Wendler; Annette Rid; Javed Khan; Tom Badgett; Sara Chandros Hull
Journal:  Pediatrics       Date:  2013-02-11       Impact factor: 7.124

8.  Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

Authors:  Susan M Wolf; Wylie Burke; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2015       Impact factor: 1.718

9.  Best ethical practices for clinicians and laboratories in the provision of noninvasive prenatal testing.

Authors:  M A Allyse; L C Sayres; M Havard; J S King; H T Greely; L Hudgins; J Taylor; M E Norton; M K Cho; D Magnus; K E Ormond
Journal:  Prenat Diagn       Date:  2013-05-21       Impact factor: 3.050

Review 10.  Genome-Wide Sequencing for Prenatal Detection of Fetal Single-Gene Disorders.

Authors:  Ignatia B van den Veyver; Christine M Eng
Journal:  Cold Spring Harb Perspect Med       Date:  2015-08-07       Impact factor: 6.915
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