Journal
AMERICAN JOURNAL OF MEDICAL GENETICS PART A
Volume 161A, Issue 5, Pages 935-950Publisher
WILEY
DOI: 10.1002/ajmg.a.35942
Keywords
exome sequencing; whole genome sequencing; informed consent; data sharing; return of results; ethical implications
Categories
Funding
- National Institutes of Health/National Human Genome Research Institute [1U54HG006493, 5R00HG004316, 5R01HG006618]
- Life Sciences Discovery Fund [2065508, 0905001]
- Washington Research Foundation
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Exome and whole genome sequencing (ES/WGS) offer potential advantages over traditional approaches to diagnostic genetic testing. Consequently, use of ES/WGS in clinical settings is rapidly becoming commonplace. Yet there are myriad moral, ethical, and perhaps legal implications attached to the use of ES and health care professionals and institutions will need to consider these implications in the context of the varied practices and policies of ES service providers. We developed core elements of content and procedures for informed consent, data sharing, and results management and a quantitative scale to assess the extent to which research protocols met the standards established by these core elements. We then used these tools to evaluate the practices and policies of each of the 6 U. S. CLIA-certified labs offering clinical ES. Approaches toward informed consent, data sharing, and results return vary widely among ES providers as do the overall potential merits and disadvantages of each, and more importantly, the balance between the two. (C) 2013 Wiley Periodicals, Inc.
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