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Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between

American journal of human genetics, 2014-06, Vol.94 (6), p.818-826 [Peer Reviewed Journal]

2014 The American Society of Human Genetics ;Copyright © 2014 The American Society of Human Genetics. Published by Elsevier Inc. All rights reserved. ;Copyright Cell Press Jun 5, 2014 ;2014 The American Society of Human Genetics. Published by Elsevier Ltd. All right reserved. 2014 The American Society of Human Genetics ;ISSN: 0002-9297 ;EISSN: 1537-6605 ;DOI: 10.1016/j.ajhg.2014.04.009 ;PMID: 24814192

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Title:
Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between
Author: Berg, Jonathan S. ; Brothers, Kyle ; Clayton, Ellen W. ; Chung, Wendy ; Evans, Barbara J. ; Evans, James P. ; Fullerton, Stephanie M. ; Gallego, Carlos J. ; Garrison, Nanibaa’ A. ; Gray, Stacy W. ; Holm, Ingrid A. ; Kullo, Iftikhar J. ; Lehmann, Lisa Soleymani ; McCarty, Cathy ; Prows, Cynthia A. ; Rehm, Heidi L. ; Sharp, Richard R. ; Salama, Joseph ; Sanderson, Saskia ; Wolf, Wendy A. ; Myers, Melanie ; Vinks, Sander ; Crosslin, David ; Leppig, Kathy ; Wicklund, Cathy ; Chute, Christopher ; Lynch, John ; De Andrade, Mariza ; Heit, John ; Brilliant, Murray ; Kitchner, Terrie ; Ritchie, Marylyn ; Persell, Stephen ; Rasmussen-Torvik, Laura ; McGregor, Tracy ; Antommaria, Armand ; Chiavacci, Rosetta ; Ledbetter, David ; Williams, Janet ; Hartzler, Andrea ; Vitek, Carolyn R. Rohrer ; Frost, Norm ; Ferryman, Kadija ; Horowitz, Carol ; Zinberg, Randi ; Pan, Vivian ; Long, Rochelle ; Ramos, Erin ; Odgis, Jackie ; Wise, Anastasia ; Hull, Sara ; Gitlin, Jonathan ; Green, Robert ; Metterville, Danielle ; McGuire, Amy ; Kong, Sek Won ; Trinidad, Sue ; Veenstra, David ; Roche, Myra ; Skinner, Debra ; Raspberry, Kelly ; O’Daniel, Julianne ; Parsons, Will ; Eng, Christine ; Hilsenbeck, Susan ; Karavite, Dean ; Conlin, Laura ; Spinner, Nancy ; Krantz, Ian ; Falk, Marni ; Santani, Avni ; Dechene, Elizabeth ; Bernhardt, Barbara ; Schuetze, Scott ; Everett, Jessica ; Gornick, Michele Caroline ; Wilfond, Ben ; Tabor, Holly ; Lemke, Amy A. ; Goddard, Katrina ; East, Kelly ; Barsh, Greg ; Koenig, Barbara ; Van Allen, Eliezer ; Garber, Judy ; Zawati, Ma’n ; Lewis, Michelle ; Savage, Sarah ; Smith, Maureen ; Roychowdhury, Sameek ; Anan, Charlisse Caga ; Hindorff, Lucia ; Hutter, Carolyn ; King, Rosalind ; Li, Rongling ; Lockhart, Nicole ; McEwen, Jean ; Scholes, Derek ; Sun, Kathie ; Burke, Wylie
Subjects: Biomedical Research - ethics ; Disclosure ; Genetic Privacy ; Genetic research ; Genetics, Medical - ethics ; Genome, Human ; Genomics ; Genomics - ethics ; Health care industry ; High-Throughput Nucleotide Sequencing ; Humans ; Medical ethics ; Morality ; Mutation ; Patient Access to Records - ethics ; Population Groups ; Societies, Scientific
Is Part Of: American journal of human genetics, 2014-06, Vol.94 (6), p.818-826
Description: As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants’ health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles.
Publisher: United States: Elsevier Inc
Language: English
Identifier: ISSN: 0002-9297
EISSN: 1537-6605
DOI: 10.1016/j.ajhg.2014.04.009
PMID: 24814192
Source: Cell Press Free Archives
GFMER Free Medical Journals
MEDLINE
PubMed Central

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Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between

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