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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. 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.