Journal
JOURNAL OF LAW MEDICINE & ETHICS
Volume 42, Issue 3, Pages 344-355Publisher
SAGE PUBLICATIONS INC
DOI: 10.1111/jlme.12151
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Funding
- NIH [P50HG004488, U01HG006487, R01CA154517]
- Robert Wood Johnson Foundation [69763, U01HG006492, R01HG004500, P50HG003390, U01HG006485, R21HG00612]
- Genome Canada/Genome Quebec [R01HG006618, R21 HG006596, P50HG007257]
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As exome and genome sequencing move into clinical application, questions surround how to elicit consent and handle potential return of individual genomic results. This study analyzes nine consent forms used in NIH-funded sequencing studies. Content analysis reveals considerable heterogeneity, including in defining results that may be returned, identifying potential benefits and risks of return, protecting privacy, addressing placement of results in the medical record, and data-sharing. In response to lack of consensus, we offer recommendations.
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