How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States
Pamela Sankar1, Paul Root Wolpe, Nora L Jones
1Center for Bioethics, University of Pennsylvania, Philadelphia, PA 19104, USA. sankarp@mail.med.upenn.edu
Objective:
To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women's decision to have clinical BRCA1/2 testing.
Methods:
Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing.
Results:
Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice.
Conclusion:
The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.
