Journal
SCIENCE TRANSLATIONAL MEDICINE
Volume 2, Issue 38, Pages -Publisher
AMER ASSOC ADVANCEMENT SCIENCE
DOI: 10.1126/scitranslmed.3000952
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Funding
- NCRR NIH HHS [UL1 RR024128-01, UL1 RR024128, 1UL1RR024128] Funding Source: Medline
- NHGRI NIH HHS [1P50HG003374, P50 HG003374, P50 HG003374-01] Funding Source: Medline
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The disclosure of individual genetic research results to study participants continues to be the subject of vigorous debate, centered primarily on the nature of the results. We suggest that research context, which is foreseeable when a study is designed, is a vital consideration that has not been sufficiently incorporated into the discussion. Adapting an ancillary care framework to explore what different contexts might call for with regard to offering individual genetic research results, our analysis suggests that, beyond exceptionally rare circumstances that give rise to a duty to rescue, a one-size-fits-all threshold cannot be developed for decisions about returning individual results. Instead, researchers and institutional review boards must consider the scope of entrustment involved in the research, as well as the intensity and duration of interactions with participants and the vulnerability and dependence of the study population.
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