Offering individual genetic research results: context matters.


Journal Article

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.

Full Text

Cited Authors

  • Beskow, LM; Burke, W

Published Date

  • June 2010

Published In

Volume / Issue

  • 2 / 38

Start / End Page

  • 38cm20 -

PubMed ID

  • 20592417

Pubmed Central ID

  • 20592417

Electronic International Standard Serial Number (EISSN)

  • 1946-6242

International Standard Serial Number (ISSN)

  • 1946-6234

Digital Object Identifier (DOI)

  • 10.1126/scitranslmed.3000952


  • eng