A good introduction in Nature on the risks and advantages of letting people know their genetic risk information via personal genetics services. I do hope that the test-takers will finally become the risk overtakers.
Helen Pearson: Genetic testing for everyone
Direct-to-consumer genetic testing is a rapidly growing market — the past year has seen the launch of companies, such as Navigenics and 23andMe in California and DeCODEme in Iceland, that offer DNA screening for a range of common genetic variants linked to disease. The testing outfits have created a buzz in the business and research communities as well as in the wider public: Google has invested in two of them and Navigenics briefly opened a store in New York’s hip SoHo district.
“It’s an intriguing idea that you can peel back your genome and reveal your future.”
The idea is that test-takers will be alerted to risks and so take preventive action where possible. But psychosocial scientists who study how people respond to risk information say there is scant evidence that people are affected deeply by genetic test results, or that such tests spur much change in behaviour.
“In public these genetic-testing companies have made a big splash, and it’s an intriguing idea that you can peel back your genome and reveal something about your future,” says Robert Green, who studies Alzheimer’s disease at Boston University in Massachusetts. “But if that idea disappoints,” he adds, “some of the lustre will fade.”
With so much uncertainty about how people deal with genetic risk, is genetic counselling necessary or helpful for people undergoing the less definitive tests for an increased propensity for heart conditions or diabetes? “I’m convinced it’s necessary,” says Tibben. But he and others in the field acknowledge that there is little in the way of controlled trials to support their belief.
“We can’t say empirically that people are better off after seeing a genetic counsellor,” says Barbara Biesecker of the US National Human Genome Research Institute in Bethesda, Maryland. Even if counselling does seem beneficial, as some studies suggest, it is not known why. Did the counsellor help the patient understand complicated risks, or just provide some face-to-face contact and empathy in a confusing medical world?