Tuesday, July 08, 2008

State of California vs. Personal Genetic Testing

This is a brief follow-up on Rob's 23andMe post. In the comments there, I wondered aloud about counselling services and possible misinterpretation of results.

It turns out the normally progressive State of California is taking those concerns seriously, and recently sent cease and desist orders to 23andMe and 12 other personal genetics companies.

The basis of the order was two-fold. First, the State requires that all such companies must be certified by both the state and federal governments, with the idea being to safeguard privacy and protect consumers from charlatans who might turn around and sell that data to the highest bidder.

Secondly, California law requires that genetic tests be ordered by the patient's doctor. Here, presumably the motivation is make sure someone (the doctor) is going to help properly interpret the results.
[T]he site still provides some probabilities of getting certain diseases. And while none of these sites are going to offer any life-shattering information (e.g. “You will die before you hit 30″), many health care professionals worry that any amount of genetic information could be misinterpreted. What happens when a patient finds out they have a lower-than-average risk of heart failure that leads them to neglect regular checkups? Then again, it’s my information - shouldn’t I be free to (mis)interpret it as I see fit?
23andMe feels they are acting withing current law, and are continuing business as usual, at the risk of a fine of up to $3000 per day.

Is this a case of an over-protective nanny state, or a legitimate consumer protection issue?


Rob said...

I am usually all for consumer protection, however, I really liked the point by 23andme that this could help initiate real personalized medicine. The capability to do personalized medicine has been around for quite awhile but it is not even on the horizon yet. Basically doctors are going to be confronted with this information from 23andme customers and be clueless. The only part that sucks is that at least for now personalized medicine will be for the rich.