Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board | Zendy

Ingrid A. Holm | Zendy; Sarah Savage | Zendy; Robert C. Green | Zendy; Eric T. Juengst | Zendy; Amy L. McGuire | Zendy; Susan Kornetsky | Zendy; Stephanie J. Brewster | Zendy; Steven Joffe | Zendy; Patrick Taylor | Zendy

Open Access

Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board

Author(s) -

Ingrid A. Holm,

Sarah Savage,

Robert C. Green,

Eric T. Juengst,

Amy L. McGuire,

Susan Kornetsky,

Stephanie J. Brewster,

Steven Joffe,

Patrick Taylor

Publication year - 2014

Publication title -

genetics in medicine

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 3.509

H-Index - 128

eISSN - 1530-0366

pISSN - 1098-3600

DOI - 10.1038/gim.2013.190

Subject(s) - harm , cohort , institutional review board , autonomy , informed consent , family medicine , general partnership , medicine , cohort study , psychology , psychiatry , alternative medicine , business , political science , social psychology , finance , law , pathology

Approaches to return individual results to participants in genomic research variably focus on actionability, duty to share, or participants' preferences. Our group at Boston Children's Hospital has prioritized participants' preferences by implementing the Gene Partnership, a genomic research repository, based on the "Informed Cohort" model that offers return of results in accordance with participant preferences. Recognizing that ethical oversight is essential, the Gene Partnership Informed Cohort Oversight Board was convened in 2009.

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