Familial Communication of Research Results: A Need to Know?
Version of Record online: 15 NOV 2011
© 2011 American Society of Law, Medicine & Ethics, Inc.
The Journal of Law, Medicine & Ethics
Volume 39, Issue 4, pages 605–613, Winter 2011
How to Cite
Black, L. and McClellan, K. A. (2011), Familial Communication of Research Results: A Need to Know?. The Journal of Law, Medicine & Ethics, 39: 605–613. doi: 10.1111/j.1748-720X.2011.00627.x
- Issue online: 15 NOV 2011
- Version of Record online: 15 NOV 2011
Research now provides participants greater indications of genetic risk for disease, even for conditions incidental to the research study. Given this development, should such information also be disclosed to the family of research participants? There has been some indication at the national level that genetic risk information can be disclosed to participants' families; however, limited attention has been given to returning research results to family. Thus, we have also incorporated the discussion surrounding the disclosure of genetic risk discovered in the clinic (e.g., genetic testing). A number of important questions are examined: Should genetic research results be provided to family? Are there differences between clinical and research findings that would prevent research results from being disclosed to family? Who should make the disclosure, if in fact it is done at all? We conclude by noting that the return of results is increasingly accepted as technology permits the discovery of more and more medically useful data. However, debates of whether results should be returned to participants must first be settled before moving to familial disclosure.