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Genetic testing - should you need a doctor's permission?
Euan Adie
Wednesday, 18 June 2008 22:57 UTC
California’s Department of Public Health has ordered 13 direct-to-consumer genetic testing companies to halt sales, causing some controversy.
The companies weren’t named but 23andMe and Navigenics – the two most well-known – have confirmed that they have recieved cease and desist letters. Both companies offer the same kind of service: spit in a test tube, pay a thousand bucks and get genotyped. A website then helps you match up your genetic variations with known risk factors for disease.
California seems to have two issues with the genetic testing companies: firstly that the labs they outsource to aren’t always licenced and secondly that they’re breaking a Californian law that requires all genetic tests to be ordered by a physician.
Some genetic testing labs are literally garage start-ups and it makes sense that they should be held to some minimum standard. Some tests can be a bit silly but others could have a major impact on your life – if somebody in your family has an inherited disease and you’re trying to decide if you should have children or not, for example. In the latter case you’d probably want some assurance that the test was properly carried out.
But should you need a doctor’s permission to obtain information about your DNA that, as Tom Goetz at Wired suggests, belongs to you in the first place?
Updated 18 June 2008 23:21 UTC
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Replies
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I point readers to recent posts at Attila’s blog – post 1 ; post 2. Also worth searching FriendFeed for terms such as 23andme – here’s a recent conversation.
Clearly, people need some guidance when interpreting their genetic tests. Frankly though, how many physicians know enough about (personal) genomics to be of any use?
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Personally I think false claims about what the test is showing should be stomped on, in the same way that false claims about the efficacy of pharmaceuticals are regulated.
However, physicians should not have any role in genetic testing, unless a patient asks for their advice. Anything legislating otherwise (and this includes regular pathology lab tests) is more about lining the pockets of doctors than protecting patients.
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A blood test is now available that can determine, in almost all cases, whether a person has the HD gene. This test cannot, however, predict when symptoms will begin or the course of the disease. The testing procedure involves sessions with various professionals. It typically includes one session devoted to each of the following: genetic counseling; a neurologic exam; a pychological interview; discussion of the results; and followup. The genetic test itself is a blood test.
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jbsjohn -
Related thread elsewhere on this forum (see here for link), about Sergey Brin and risk of Parkinson’s.
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