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California Cracks Down On Genetic Testing
genie-out-of-the-bottle writes "California's Department of Public Health has sent cease-and-desist notices to 13 companies that market genetic testing directly to consumers. (We discussed these services when they launched.) Allegedly, under state law, California residents must submit a doctor's order to have a genetic test run. It will be interesting to see if the government will actually succeed in putting the genetic genie back in the bottle, given that all you need for testing is a few drops of saliva. The effort closely resembles US government attempts to block export of strong encryption product back in '90s." A Wired editor has up an opinion piece arguing that his DNA is his business and none of the government's.
I think this has more to do with privacy than "keeping your data from you". Ask it stands now what's to stop you from sending a cheek swab with your neighbor's DNA instead of yours under a false name? If a doctor is involved at least the perpetrator must make a face to face appearance under the fake name with someone who would be "accountable" before being able to carry through with his plan.
Actually it won't be rubber stamped. Unless the individual has some family history of the genetic disease or symptoms which are suggestive of it genetic testing is NOT OFFERED by physicians.
Likewise if a family member has such symptoms or his side of the family has these traits, genetic testing is disallowed unless the person actually agrees to it. I.e. a wife wants to know if her husband has Huntington's, she cannot force him to take a test or bring a sample to a physician and ask for it to be tested. Even if she only wants the information for future conception, the doctor won't allow it.
What's to keep someone - anyone - your wife, boss, insurer, whoever, from taking that toothpick you used after lunch and sending it in to one of these companies?
I think the law is intended to protect YOU from others, not from yourself. If you actually have some problem then you can go to a physician and have total confidence that the only person who will know the result is you and him. Hell, you can even withhold it from him if you wish. As it is now a person can send in ANYONE'S DNA and get their result.
I'd rather go to a doctor than leave that second option as a possibility. That's the option that leads down the road to real Gattaca-style shit. It's a future I'd rather NOT live in.
Because without the ability to read it we lack the ability to use it to discriminate.
Say, for instance, your employer were able to collect you DNA. How is immaterial at the moment. Your company does this, and gets you profiled. Uh-oh, high risk for cancer. So they fire you so their insurance premiums won't go up. Also, can you imagine how much that information is worth to your insurance company?
Yes, there are already some laws on the books against genetic discrimination, but a lot of places don't have to tell you why they fired you, and if you didn't know they got the DNA...
Besides, it's just plain a privacy issue. My DNA is my business. Not yours. However, with the mail-in DNA testing, if you were to get some of my DNA, you could find out what's in my DNA. Why do you think you should have that right?
A lot of commercial genetic testing is scientifically worthless, even harmful if they give you bad information about what your genetics actually means for you or your children. There needs to be some kind of regulation (regarding claims they can make, information supplied to customers, actual evidence for the disease-test relationship they claim etc), but at the moment the public health people can't agree on what form that regulation should take, so there might be a lot of this 21st century snake-oil around for a long time.
I don't know anything about California, but it could be that the government is trying to protect people from possible harms of bad and unnecessary testing.