Disclosing Preliminary Results to Research Subjects
Author(s):
Eric Juengst, Ph.D.
During a family linkage study in search of a genetic mutation conferring increased risk for breast cancer, one woman subject approaches you and announces that she can no longer endure the uncertainty involved in living with the family's unusually high rate of fatal breast cancer. She has decided to undergo double prophylatic mastectomy, but wants to know what the research team can tell her about her genetic risk status.
Your team has in fact identified some genetic markers that seem to travel through the family with the (still unknown) mutation, but are far from satisfied that the linkage between the markers and the mutation is reliable enough to use for clinical purposes. According to your preliminary analysis using these markers, however, this subject does not appear to carry the family's high risk conferring mutation.
How should you respond to this subject's request for information?
Cite this page:
Eric Juengst, Ph.D.
"Disclosing Preliminary Results to Research Subjects"
Online Ethics Center for Engineering
8/28/2006 11:06:44 AM
National Academy of Engineering
Accessed: Saturday, October 11, 2008
<www.onlineethics.org/CMS/research/modindex/resethpages/disclose.aspx>