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California Cracks Down On Genetic Testing

Posted by kdawson on from the first-salvo-in-a-long-campaign dept.

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.

10 of 165 comments (clear)

  1. Doctors contribute to government corruption. by Futurepower(R) · · Score: 3, Insightful

    There have been a lot of initiatives like this that are designed to make money for doctors.

    1. Re:Doctors contribute to government corruption. by Robert1 · · Score: 5, Insightful

      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.

    2. Re:Doctors contribute to government corruption. by stranger_to_himself · · Score: 3, Insightful

      $1000 is not much money, and I'd find it interesting to have access to the data out of sheer intellectual curiosity -- and I find it offensive that anyone would find it to be their responsibility to "protect" me from doing that. What's next, "protecting" people from blowing their money on space tourism, or on visiting museums?

      It's a case of balancing the risks against the rewards. Sure you might find it interesting, but a lot of people will get tests which are often meaningless medically and which they will base lifestyle or health choices on.

      I'm not sure on which side of the argument I'm on at the moment, but I'm very nervous about the prospect of people selling tests for disease genes without any requirement for evidence of the disease-gene interaction, and for the correct information for the implications to be supplied to customers.

      Would you like to know your SORL1 genotype? What if I told you it was possibly liked to Alzheimer's disease? What if I told you it was definitely liked to young onset Alzheimer's disease, but I was lying? Would you like your wife's genotype? How would you interpret the information? I understand the intellectual curiosity and freedom points of view but this can do harm as well as good.

  2. Maybe it's actually a good thing by locallyunscene · · Score: 5, Insightful

    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.

    1. Re:Maybe it's actually a good thing by MightyMartian · · Score: 4, Insightful

      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.


      Perhaps what should be banned is accepting DNA samples indirectly.
      --
      The world's burning. Moped Jesus spotted on I50. Details at 11.
  3. I am trying to see the other side of this issue... by cortesoft · · Score: 3, Insightful

    I am not usually one to jump on the anti-regulation bandwagon. I appreciate the need for restrictions on many practices, and regulatory agencies to make sure people practicing in the industry are competent and perform their jobs safely. HOWEVER, this seems like something that should be outside the realms of regulation (of this sort). There is no medicine being practiced here; there is no diagnosis, no prescription, no anything of that sort going on. They don't perform an exam, they don't even touch the customer (in fact I am pretty sure these companies don't even SEE their customers). In fact, I find it hard to even classify what they are doing as being in the medical field at all - they don't claim to diagnose or cure any disease. Given the rampant availability of 'natural' cures for things that have no regulatory body overseeing them, why is this something that needs to be regulated? Those 'natural' cures and supplements ARE saying they cure diseases(disclaimers not withstanding), with zero regulatory oversight. How is knowing my DNA sequence more dangerous to me than taking unknown, unregulated herbal supplements? The government's job shouldn't be to require someone act as a filter for my own personal information. My own personal information is not 'dangerous', and I do not need someone holding my hand while I find out about it; if we hold to this view, how is it different than saying "We need to restrict public access to this information about scientology because if people read about it without someone to interpret it for them, they might believe it to be true and that could cause them harm." I can protect myself from this dangerous information, thank you very much.

  4. Re:What's the alleged good reason... by Actually,+I+do+RTFA · · Score: 3, Insightful

    ...behind those restrictions? Do you also need a permission to measure your weight, or to look in the mirror?

    Because it would be very easy for me to collect saliva from someone whom I know in real life, and run tests on their DNA without their knowledge or consent. Also, there is a desire to prevent coersion towards that same goal.

    --
    Your ad here. Ask me how!
  5. Re:I do support this, in some ways. by Paranatural · · Score: 4, Insightful

    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?

  6. Re:I do support this, in some ways. by lgw · · Score: 3, Insightful

    Or, we could just stop using companies as insurance providers, and that whole problem goes away. It's just a stupid situation we've become trapped in. Further, insurance is supposed to protect you against risks, not certainties.

    If you're a bad driver, should you not be charged more for liability insurance. If you've a genetic redisposition towards an expensive for of cancer, should you not pay more for the that? If you've have a genetic condition that carries the certainty of expensive treatment, then insurance isn't even relevent, you need a budget (or charity) not proection against risk.

    Why people what to conflate health insurance and charity is beyond me - insurance companies are just about the worst possible choice as charity providers.

    --
    Socialism: a lie told by totalitarians and believed by fools.
  7. Re:You don't own your DNA by stranger_to_himself · · Score: 4, Insightful

    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.