This week, I interviewed cardiac nurse Kendra James of Diabetes Notes and A Hearty Life about her experience with the deCODE T2 genetic test and although she had already been diagnosed with type 2 diabetes, it was still an interesting experience for her.
Hsien asked whether Kendra would consider having her daughters tested for this or any other genes. As the mother of a three-year-old, this made me think. When talking about genetic risk information, it’s important to consider a child’s right to privacy, or you might call it, a child’s right to not know. Young children aren’t in a position to make educated, informed decisions about things like the impact of genetic risk information. As parents, we are their proxies until they reach the age of 18. So unless genetic information were to affect their immediate health, I think that choice lies with them, not us.
I am absolutely interested in genetic risk information for myself — I agree with Kendra’s “knowledge is power” sentiment. With risk information, you can make choices about prevention (and perhaps, stick to them with greater determination). But, in terms of children’s health, as a parent you can make lifestyle and other choices based on family history alone, i.e., “Mom has a genetic risk and it has such-and-so inheritance pattern — which means you’ve got the risk of a risk. When you’re older, you can choose whether to learn if you carry the risk or not.”
Parents out there, what do you think? Ethical watchdogs? Genetic counselors — I know you’re steeped in this — give us your two cents.
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on Friday, June 15th, 2007 at 4:50 pm and is filed under Diabetes.
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