If you underwent a genetic test for a heart condition, but the test also revealed that you have a high risk of colon cancer, would you want to know?
A respected scientific society says your doctor should tell you, but the group is receiving criticism for its recommendation that "incidental findings" of genetic tests be shared with patients.
Incidental findings are unexpected results, unrelated to the reason for testing. What to do with these findings has been a controversial issue for adults undergoing genetic testing, as well as children.
In March, the American College of Medical Genetics and Genomics (ACMG) released guidelines saying that when patients receive genetic testing for any medical reason, they should be screened for mutations in an additional 57 genes, including mutations that strongly increase the risk of breast, ovarian and colon cancer.
The ACMG argues that doctors have an obligation to look for and report these mutations because there are ways that people can act to reduce their of developing a medical disorder.
However, some researchers and bioethicists say the new recommendations go too far, and take away patients' rights to refuse medical information they do not wish to know.
Informed consent
A crucial part of genetic testing ethics is ensuring that patients understand what a test might find, and what those findings could mean for future treatment.
Under the new recommendations, a patient who consents to any genetic test is consenting to be screened for mutations in an additional 57 genes. Some bioethicists take issue with this approach, because patients may not wish to know their results for all of these genes.
A positive result for any one of these mutations may increase patients' anxiety, or cause them to live their life differently, said Susan Wolf, a professor of law, medicine and public policy at the University of Minnesota.
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Genetic Testing Guidelines Under Fire