Mary Carmichael is writing a multi-part series about DNA testing:
On July 22, Congress held a hearing on direct-to-consumer (DTC) genetic tests, services that analyze your DNA and interpret the results in exchange for a few hundred bucks — no doctor necessary. The hearing could have been a thoughtful national conversation about science, business, and ethics. Alas, it devolved instead into a series of gotcha moments, starring a General Accounting Office sting operation that came off like a cross between the ACORN videos and the world’s worst ad for snake oil.
Time and again, on tape, an undercover agent called up an unidentified testing company and asked an ill-informed question. (“Is it OK if I stop taking my cholesterol meds and instead take the nutritional supplements you sell? If I can manage to get hold of my fiancé’s saliva without him knowing, will you run it through your machines so I can surprise him with the ‘gift’ of his own data?”) And time and again, the phone rep sank to the occasion and made the company look awful. (Sure, lay off the pills and take our supplements! Of course we’ll analyze your fiancé’s spit without his permission even though that’s illegal, unethical, and weird!)
I listened to the tape several times the day it was released, despairing at the way people were taking advantage of gullible, albeit fictional consumers, which was clearly how the congressmen who held the hearing wanted me to react. Then I started to worry about something else. How much time did I even have left to decide whether I was going to take a test myself? Even before the hearing, the FDA had announced its plans to regulate all DTC genetic tests, possibly so heavily as to keep them off the market; the hearing was just the sort of thing that could push it to move faster. What if, by the time I finally decided if I wanted one of these tests, I couldn’t buy one anymore? My credit card was sitting next to my laptop. I did something that in retrospect seems a bit rash. There’s a DNA-collection kit on my desk now, taunting me — because although I bought the thing, I still can’t decide whether I actually want to use it.
The sheer volume of misinformation on DNA testing — combined with public belief in the amazing accuracy of DNA testing (probably induced by watching too many crime investigation TV shows) — leaves the legitimate companies in an awkward situation. The actual DNA self-tests don’t tell you what you might expect, and can tell you things you don’t want to know. Politicians jumping in now (at the prompting of bureaucrats who want more power to regulate) will only make the situation more confused.
H/T to BoingBoing for the link.
