How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States.
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.


CONCLUSIONS
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.
Sankar
Pamela
P
Center for Bioethics, University of Pennsylvania, Philadelphia, PA 19104, USA. sankarp@mail.med.upenn.edu
Wolpe
Paul Root
PR
Jones
Nora L
NL
Cho
Mildred
M
D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics*; D003657:Decision Making; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D014481:United States