Abstract
Genetic testing for mutations in BRCA1 and BRCA2, which are associated with increased lifetime risk of breast and ovarian cancer, may become the first widely accessible genetic testing for common adult onset diseases. The Stanford Program in Genomics, Ethics, and Society convened a multi-disciplinary Working Group that, in a lengthy process, studied the ethical, legal, and social issues arising from testing. The Working Group concluded that testing for mutations BRCA1 and BRCA2 genes is not appropriate for widespread clinical use or population screening, but may be beneficial in some circumstances—for example, in families experiencing multiple cases of cancer. Testing would raise fewer problems if definitive preventive interventions were available for those with the mutations, and if society better protected people with genetic risk of cancer. Even with current limitations, competent adults at high risk may choose to participate in a testing program. Such programs, however, must meet rigorous standards, including genetic counseling, confidentiality, and follow-up care. Health insurance should pay for all components of testing when it is appropriate; governments should take steps to protect people from discrimination and invasions of their privacy, as well as from the offering and advertising of inappropriate testing. We call on governments, researchers, insurers, testing laboratories, healthcare providers, and individuals to take important steps to help ensure that testing for BRCA1 and BRCA2 mutations, surely a forerunner of the many forms of genetic testing that will follow, improves people's lives, and does not diminish them.
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