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Biotech Privacy News Science

California Considers DNA Privacy Law 119

Posted by timothy
from the keep-your-information-under-wraps dept.
ananyo writes "California lawmakers are weighing a bill aimed at protecting their state's citizens from surreptitious genetic testing but scientists are voicing their growing concerns that, if passed, such a law would have a costly and damaging effect on research. The bill, dubbed the Genetic Information Privacy Act, would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic information—including DNA, genetic test results, and even family disease history. The University of California has submitted a formal letter objecting to the bill, estimating that the measure could increase administrative costs by up to $594,000 annually — money which would come out of the cash-strapped state's General Fund. The university has also expressed concern that its researchers would suffer competitive losses in obtaining research grants."
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California Considers DNA Privacy Law

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  • by davidwr (791652) on Saturday May 19, 2012 @11:02PM (#40054973) Homepage Journal

    They should go one further and replace "uniquely identifying" DNA testing of criminal suspects with "just enough DNA to exclude the suspect" tests, repeated as needed with different parts of the DNA until the suspect is cleared or it's really his DNA.

    Instead of testing a few dozen markers all at once and keeping that data on file, test only one or two. If it's a match, test another marker or two, and so on. Stop and cut the guy loose as soon as you find a mis-match.

    Not only is this more morally justifiable than taking a full DNA "fingerprint," it will cut down on people who object to having DNA taken because they either know or believe they have left DNA at a place where a crime occurred in the past (even if they didn't commit any crimes) or they believe they are likely to do so in the future.

    Also, change arrest-expunction laws for those who aren't convicted so that once the case is closed OR once it's obvious that the state isn't still looking at a given suspect, his DNA, fingerprints, etc. are automatically destroyed, without the former suspect having to hire a lawyer or pay fees to make it happen.

  • by Shavano (2541114) on Saturday May 19, 2012 @11:03PM (#40054979)

    It's just a consent form. Make sure it assigns the right to use your genetic information for any research purpose you like, publish it, exchange it with others, etc. etc. Get your subjects to sign it and stuff it in a file cabinet. Done.

    Is there an exception for law enforcement?

  • by Bieeanda (961632) on Saturday May 19, 2012 @11:07PM (#40054993)
    Yeah. I'm sure I echo the family of Henrietta Lacks when I say 'Fuck 'em.'
  • by Baloroth (2370816) on Saturday May 19, 2012 @11:41PM (#40055107)

    First of all, it isn't really a right, at least not yet, and second, without looking at the specific provisions and language of the bill you cannot tell whether or not the restrictions placed are reasonable. It certainly wouldn't be the first time an apparently well intentioned bill was written in such a way as to be incredibly and excessively difficult and expensive to follow. For one thing, TFA mentions that the only people who can access the information are people listed in the consent forms, which means any person doing the research as well as anyone assisting needs to be named, which is a massive PITA. It might even mean certain scientific papers couldn't be published, if it required disclosure of specifics about the genetic information (which is often the point). I feel that a scientists might object to such restrictions.

    It would also require any current studies to gain the permission of anyone whose genetics they are currently studying (often thousands for each study), and it essentially means they would have to completely throw out every single data set they have collected once the study is done, too. All in all, these are scientists doing research making the complaint. I don't think their goal is to infringe people's privacy.

    And ironically, the bill will probably decrease the privacy of people involved in the research. Since each use requires the authorization of the individuals whose genetics are involved, you can't permanently anonymize the data: someone needs to be able to find out to whom each strand of DNA they are working on belongs (and show proof that each individual has given consent), which means the current anonymization that is standard cannot be employed. Translation: for research purposes, the bill might well end up doing the exact opposite of what is intended.

  • by rtb61 (674572) on Sunday May 20, 2012 @04:19AM (#40055725) Homepage

    When it comes to ethics and psychopathy being tied to genetics, should privacy be allowed when seeking elected office or taking a major role in a corporation. When it comes to person convicted of crime should psychopathic tendencies as indicated by their genes be hidden from future partners, how far is that they find out by being beaten to death. So perhaps some genetic traits can be secret but others should be divulged under certain circumstances. No psychopaths in political office, as police or teachers. If your child was marrying a psychopath would you accept it be kept a secret from them or would you want the information to be provided to them before it's too late.

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