Informed consent for BRCA1 and BRCA2 testing: what clinicians should know about the process and content.
The exploration and understanding of the human genome has begun to alter the nature of health care. Scientific advances have provided tools to predict susceptibility to a number of adult-onset diseases, including cancer. Some of the most powerful lessons learned about both the promise and the threat of hereditary cancer risk assessment have come from the study of the genetic testing process among women and families at risk for breast and ovarian cancer. The complexity of the issues associated with genetic testing for these cancers has raised concerns about the informed consent process. This paper reviews the issues associated with informed consent for genetic testing for breast and ovarian cancer risk. The paper also addresses the risks, benefits, and limitations of genetic testing, as well as confidentiality issues that should be addressed in this process. Included is a discussion of the alternatives available to women and families considering genetic testing.
Miesfeldt
S
S
Cancer Genetics Program, University of Virginia Health System, Charlottesville 22908, USA.
Jones
S M
SM
Cohn
W F
WF
D000328:Adult; D024682:BRCA2 Protein; D001943:Breast Neoplasms / Q000175:diagnosis / Q000235:genetics*; D003219:Confidentiality; D003362:Cost-Benefit Analysis; D003657:Decision Making; D005192:Family Health; D005260:Female; D019398:Genes, BRCA1 / Q000235:genetics*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000331:legislation & jurisprudence*; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence*; D008403:Mass Screening / Q000331:legislation & jurisprudence*; D009363:Neoplasm Proteins / Q000235:genetics*; D010051:Ovarian Neoplasms / Q000175:diagnosis / Q000235:genetics*; D010817:Physician-Patient Relations; D011247:Pregnancy; D014157:Transcription Factors / Q000235:genetics*
D024682:BRCA2 Protein; D009363:Neoplasm Proteins; D014157:Transcription Factors