Dr. Burke is Professor and former Chair of the Department of Bioethics and Humanities and is an internist and medical geneticist. Her research interests include the ethical and policy implications of genomics.
Return of results: Ethical and legal distinctions between research and clinical care
Article first published online: 10 MAR 2014
© 2014 Wiley Periodicals, Inc.
American Journal of Medical Genetics Part C: Seminars in Medical Genetics
Special Issue: Implementation of Genomic Medicine
Volume 166, Issue 1, pages 105–111, March 2014
How to Cite
2014. Return of results: Ethical and legal distinctions between research and clinical care. Am J Med Genet Part C Semin Med Genet 166C:105–111., , .
Conflict of interest: none.
* Correspondence to: Wylie Burke, M.D., Ph.D., University of Washington, Box 357120, 1959 NE Pacific, Rm A204 Seattle, WA 98195. E-mail: email@example.com
- Issue published online: 18 MAR 2014
- Article first published online: 10 MAR 2014
- National Institutes of Health (National Human Genome Research Institute and National Cancer Institute) U01HG006507 U01HG007307
- genetic research results;
- medical practice;
The return of individual results to research participants has been vigorously debated. Consensus statements indicate that researchers and bioethicists consider the return of research results most appropriate when the findings are clinically relevant. Even when clinical utility is the motivator, however, the return of individual research results is not equivalent to clinical care. There are important differences in the domains of research and medical care, both from a legal standpoint and in terms of the ethical responsibilities of clinicians and researchers. As a corollary, researchers risk promoting a therapeutic misconception if they create quasi-clinical settings for return of clinically relevant research results. Rather, efforts should be focused on clarity in the provision of research results, appropriate caveats and, most important, appropriate referrals when the results may be helpful to consider in medical care. © 2014 Wiley Periodicals, Inc.