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Biotech Your Rights Online

California Cracks Down On Genetic Testing 165

Posted by kdawson
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.
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California Cracks Down On Genetic Testing

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  • There have been a lot of initiatives like this that are designed to make money for doctors.
  • by thedak (833551) on Tuesday June 17, 2008 @04:50PM (#23829871) Journal
    Is that not more the duty of the company offering such a service and not ours? If they're willing to pony up the licensing fees to offer such a service to us, and the consumer is willing to pay prices in line with that then how is it the government's business. It's just a perpetuation of the nanny state if you ask me.

    -- note: no I'm not interested in said service, no I don't really think it's that great of an idea, or feel any desire to use it. But it's still an issue of freedom.
  • by locallyunscene (1000523) on Tuesday June 17, 2008 @04:55PM (#23829937)
    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.
  • While there are some half-decent arguments (reactionist people taking tests then making up their own "treatment" plan for their 1% chance of developing condition X), I agree this is for doctors.

    These kind of rubber stamp things (since I assume most doctors would just say "yes" to simplify their lives) just raise health care costs. By requiring this signature you take up the doctor's time and it's harder for you to compare and get things done.

    This seems like regulation for the sake of regulation to me.

  • by MightyMartian (840721) on Tuesday June 17, 2008 @04:57PM (#23829989) Journal

    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.
  • by cortesoft (1150075) on Tuesday June 17, 2008 @05:08PM (#23830251)
    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.
  • by Actually, I do RTFA (1058596) on Tuesday June 17, 2008 @05:08PM (#23830261)

    ...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.

  • by Robert1 (513674) on Tuesday June 17, 2008 @05:12PM (#23830347) Homepage
    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.
  • by locallyunscene (1000523) on Tuesday June 17, 2008 @05:15PM (#23830411)
    "Perhaps what should be banned is accepting DNA samples indirectly."

    I would hope that's all ready banned. The question is how to enforce that. I would prefer the onus of accountability to be on the DNA analyzing company rather than a doctor, so I think the law could be better in that respect.
  • by maxume (22995) on Tuesday June 17, 2008 @05:16PM (#23830443)
    Regulations against shitting in the creek are regulation for the sake of drinkable water.

    If you don't think people would shit in their own drinking water, read a history book.
  • by bperkins (12056) on Tuesday June 17, 2008 @05:16PM (#23830445) Homepage Journal
    (since I assume most doctors would just say "yes" to simplify their lives)

    While this _would_ increase the number of office visits, it's likely that it would not generate a great deal of revenue, since it would likely be coded at the lowest level.

    I know a number of primary care physicians, and this just isn't the type of visit that they would try to encourage. Furthermore, most physicians I know (IMHO all responsible ones) would discourage unwarranted genetic testing, as well as any other type of medical tests that don't have a lot of evidence behind them as being useful for patient outcome. This is _not_ the type of thing a physician wants to deal with; trying to talk people out of things they are dead set on is annoying.

    Genetic screeners are essentially selling snake oil by selling directly to consumers. I'd probably not go so far as California in stopping them, since in the end they'll just be encouraging greedy physicians to set up specialized practices where they can charge an arm and a leg to have the tests ordered. However I think California is right to try to protect consumers from this type of nonsense.

  • by Paranatural (661514) on Tuesday June 17, 2008 @05:19PM (#23830511)
    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?
  • by GeeBee (104073) on Tuesday June 17, 2008 @05:24PM (#23830625) Homepage
    As long as it is non-invasive, I ought to be able to decide for myself what tests I want. If you need consumer protection then that's up to the FDA to get unsafe and ineffective products off of the market. If anything. being able to self-test will get a person who otherwise wouldn't have gone to the doctor to go if something bad is detected.

    I live in CA and I do want a safety net, but not a nanny state.
  • by lgw (121541) on Tuesday June 17, 2008 @05:29PM (#23830695) Journal
    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.
  • by DarkMage0707077 (1284674) on Tuesday June 17, 2008 @05:30PM (#23830713)
    Didn't Bush just recently sign in a law that helps protect peoples' genetic rights? What was that about, if not to help with these kinds of issues? (Thought I saw this in Slashdot, but I CFTA.)
  • Duh? (Score:2, Insightful)

    by sexconker (1179573) on Tuesday June 17, 2008 @05:30PM (#23830733)
    I love this law.

    I don't want people testing my DNA without my consent. When you involve a doctor, you add a barrier against unscrupulous people. Presumably, a doctor will take the sample themselves before sending it off. No worries about someone finding my hair and

    Of course, it will be done anyway, just like when people cheat drug tests. And of course, there are unscrupulous doctors, too.

    The fact that the law is there is a good thing. If someone steals a sample of my DNA, has it checked, and finds out I'm vulnerable to Kryptonite, I'd like the legal ability to sue for damages and possibly suppress that information.
  • by cduffy (652) <charles+slashdot@dyfis.net> on Tuesday June 17, 2008 @05:42PM (#23830927)
    It may make more sense, but it's not good law. Should there be laws to prevent my boss or insurance agent from surreptitiously running a DNA test on me? Absolutely, and those laws should have teeth. Should I be prevented from getting a mail-order DNA test because of something someone else might do? Absolutely not.
  • by stranger_to_himself (1132241) on Tuesday June 17, 2008 @06:01PM (#23831137) Journal

    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.

  • by 1 a bee (817783) on Tuesday June 17, 2008 @06:02PM (#23831143)

    A better solution is to be able to do it freely, you actually have to show up at the lab and be able to certify you are who you say you are.

    Nice proposal: the part about actually having to show up at the lab. This makes it somewhat harder to spy on other people's genetic information.

    The second part of parent's proposal, though, I think should be the exact opposite: the lab shall not require the identity of the customer. That way, only you have the power to attach a name to your genetic data.

  • by stranger_to_himself (1132241) on Tuesday June 17, 2008 @06:15PM (#23831307) Journal

    $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.

  • by Jherek Carnelian (831679) on Tuesday June 17, 2008 @06:31PM (#23831499)

    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.
    RRRRRight.

    With all the paperwork for insurance companies (both your health insurance and the doc's liability insurance) nobody takes your privacy seriously in the medical profession. Sure they claim to adhere to HIPPA, but that's not the same thing. True privacy would mean that:

    1) The fact that you requested a test is never recorded
    2) The sample being tested is not associated with you in any way
    3) The results of the test are not recorded with any identifiable information
    4) You can retrieve the results without disclosing any identifiable information

    All of these sound relatively easy to do, but just try it. Go to a doctor, tell them you want to pay cash for such a test (or any test, like even for strep throat) and that you want to remain anonymous (and no you can't just lie about your identity, that's just avoiding the problem, not eliminating it). 99% of them will treat you like a bug-eyed martian, the other 1% will understand your concerns but will say that they just aren't set up to provide absolute privacy.

    Remember folks, if its written down, it can be disclosed. What's against the law to disclose today may not be against the law tomorrow and what is against the law today can be waived voluntarily (job interview, they want your medical history, you need a job so you waive your right to privacy, when the choice is between starvation for you and your family 'voluntary' is really mandatory) nor can any law of man prevent 'accidental disclosure.'
  • by hiryuu (125210) on Tuesday June 17, 2008 @10:49PM (#23834051)
    Medical care *cannot* be an inalienable right...

    To be fair, I don't think I said anything about medical care being an inalienable right, but was taking the premise of your analogy and illustrating what, to me, was a particularly sizable disparity. Choice is a huge differentiating factor there, though one could argue that it might well be irrelevant (which you've done quite cogently).

    I think there are plenty of arguments to be made for medical care being a right insofar as it's a requirement for the support of those things which are inarguably inalienable (for the sake of clarity, we'll call those "life, liberty, and pursuit of happiness"). One needs access to water to live, and there are numerous organizations (governmental and otherwise) worldwide that believe that to be inalienable. It doesn't seem to me like a serious stretch of imagination to call access to food and medical care inalienable rights, as well.

    Note that I did say "access" is the right, and not the care itself. How that is provided and paid for is an administrative detail, albeit a complicated one. (Understatement of the year, that one.) A system where the medical care necessary for someone to live is economically unavailable to them would seem to be barring access, and denying that right.

    I'll readily concede a few points - one of which is that I don't pretend to know enough to have an answer to the healthcare dilemma that is both practical and morally just, and the other of which is that you're entirely right about government not having a good track record on addressing problems of distribution. :)

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