Offering individual genetic research results: context matters

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 suf...

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Bibliographic Details
Published in:Science translational medicine 2010-06, Vol.2 (38), p.38cm20-38cm20
Main Authors: Beskow, Laura M, Burke, Wylie
Format: Article
Language:English
Subjects:
Disclosure - ethics
Ethics, Research
Genetic Research - ethics
Humans
Precision Medicine - ethics
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Summary: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.
ISSN:1946-6234
1946-6242
DOI:10.1126/scitranslmed.3000952