Abstract
Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce ‘generalisable’ knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results.
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The authors wish to thank Ronald Stolk for his helpful comments.
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Wallace, S.E., Kent, A. Population biobanks and returning individual research results: mission impossible or new directions?. Hum Genet 130, 393–401 (2011). https://doi.org/10.1007/s00439-011-1021-x
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DOI: https://doi.org/10.1007/s00439-011-1021-x