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In the land of personal gene testing, who rules?

June 20, 2008 | 10:47 am


Last week, California health authorities cracked down on 13 companies that offer personal genetic testing to consumers, saying the labs must prove they meet the state's quality and reliability standards. The state wants to make sure labs offering direct-to-consumer testing are certified and meet quality assurance standards. They also want the labs to show that any testing being sold to Californians has been ordered by a doctor.

That is the crux of this controversy: Should a doctor's authorization be required for someone to obtain personal genetic testing? So far, California and New York state authorities say yes. But this debate is just beginning. The controversy is being played out this week on the many genetic medicine blogs. Daniel at Genetic Future writes:

"To a large extent what's going on here is a turf war between proponents of the old-school medical regulation model and upstart advocates of the free information paradigm of the Google generation."

Jason at TechCrunch suggests the lack of professional medical advice accompanying personal gene testing is troublesome, too:

"The problem with this kind of casual DNA testing is that it almost trivializes the importance of genetic information."

Indeed, what is the intent of personal gene testing? One company, DNA Direct, says it believes gene testing is a medical service and requires doctors to authorize tests. On the other side, some labs are promoting services that help people connect with distant, possibly famous, relatives and discover other, seemingly trivial, information. Example: Do you have a gene that makes you adventurous? Health experts are also becoming increasingly uncomfortable with the publicity surrounding the gene testing of the rich and famous. According to the geneticsandhealth blog, Larry King, cosmologist Stephen Hawking and Microsoft co-founder Paul Allen are all having such tests done. Is personal genetic testing a toy for the rich or a practical medical service?

-- Shari Roan

Photo: Mathieu Young / CNN