A right to know? Should children be told when a parent’s genetic test reveals hereditary risks?

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Credit: Hamilton College

What are the legal, professional and ethical, duties or responsibilities of researchers and clinicians in handling genetic testing and the knowledge that might be gained from it?

Case study 2

Patricia is a 45-year-old patient who has developed breast cancer; she’s tested for BRCA1 and BRCA2 mutations.

The test results come back and Patricia carries a mutation in BRCA1 known to be related to breast and ovarian cancer. Patricia also has three children, all of whom have a 50% chance of having inherited the BRCA1 mutation.

What if Patricia doesn’t tell her children of their risks? This is highly unusual, but clinicians wouldn’t be breaking the law by telling Patricia’s children that they are at risk.

Related article:  Why China's willingness to push ethical boundaries with CRISPR research 'could end up benefiting us all'

“In this example, if we don’t have Patricia’s consent to telling her children about their possible inheritance, then we might just tell them they are at risk of an inherited condition. We don’t need to tell her children anything about Patricia, we could limit ourselves to saying, ‘We have reason to believe you are at increased risk of an inherited condition’. To Patricia I might say, ‘I won’t tell anyone private information about you, but I may need to tell family members about their familial risk’,” [said geneticist Anneke Lucassen.]

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