Wednesday, June 10, 2009

Genewatch: take care with our genetic privacy

Dr Helen Wallace, director of Genewatch UK, who has proven to be consistently clear and articulate in explaining complex subject matter to a lay audience, has an interesting letter in today's Times. She explains the dangers genetic research underpinned by an oversimplied faith in genetic determinism may pose for personal privacy. I hope she will not mind me quoting a substantive proportion of it here
"Your genetic make-up can be used to tag you like a fingerprint, identify your children and categorise you according to your claimed genetic risk. The questions are: can you trust the genetic information you are given, is it good for health, and do the benefits outweigh the loss of privacy for individuals and their families?

Tests that link your genetic make-up to your risk of future illness are unregulated and many companies are making claims about genetic risk that are completely false. Even valid claims are largely meaningless because genes are poor predictors of most diseases in most people, and not useful to decide who should give up smoking or eat a healthy diet. Testing healthy people’s genes suits commercial interests because rich, healthy people make a better market for health products than poor, sick people do. Personalised marketing of medicines, supplements and health scans to the worried well is the commercial aim. It also suits a wide range of industries to blame your genes, not their products or pollution, for your risk of cancer or obesity.

Handing over our DNA to governments or companies may be good for them, but is it really good for us? There is no evidence that it will be good for health to medicate swaths of the healthy population based on misleading claims about genetic risk. Further, there is a real danger that this will divert precious NHS resources from treating people who are sick."

We need more scientists with Dr Wallace's communication skills to engage in public debate in these areas to facilitate far wider understanding of the development of these kinds of technologies.

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