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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 jbeach (852844) on Saturday May 19, 2012 @10:43PM (#40054911) Homepage Journal

    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."

    Too bad for them people's rights can be so inconvenient and costly. Oh well.

  • by TubeSteak (669689) on Saturday May 19, 2012 @11:08PM (#40055003) Journal

    It's just a consent form.

    There's a reason so many shitty things in this world are opt-out.
    If you make them opt-in, almost no one consents.
    If you make it opt-out, even a small amount of effort is too much for most people.

    You'd think the field of Medicine, with its strong emphasis on ethics, would understand the rational behind an opt-in system of DNA collection for research purposes.

  • by davester666 (731373) on Saturday May 19, 2012 @11:51PM (#40055147) Journal

    The thing is, it'll become an opt-in for everyone, at the doctors office. As in, oh, you need a test, here, sign this generic permission form which just happens to sign away your DNA for any purpose [not just testing for your own personal health].

    Otherwise, big pharma would have to track which DNA samples have permission to use for research and which don't, and they just want to use everything.

  • by Grayhand (2610049) on Sunday May 20, 2012 @01:17AM (#40055375)
    Insurance companies would love to get their hands on this data. Got the genetic tendency for a form of cancer it doesn't matter if you never develop it your rates will go up or better yet you get canceled without notice.
  • by martin-boundary (547041) on Sunday May 20, 2012 @01:21AM (#40055379)
    That's what privacy is. "The state of being alone or kept apart from others". It means you don't get the benefits, but you're also not subject to the abuses.

    Overall, I think that most agree that the abuses outweigh the benefits these days. With Facebook like corporations mining data from literally millions of people, the benefit of scientists having access to the names of 100 thousand people in a study isn't comparable, even if they are able to incidentally warn or help maybe 50 who exhibit certain symptoms.

    We've created psychotic monster corporations, and now we have to accept the consequences, which includes a steep price to limit the privacy problem and an even greater economic one if we decide to fix it.

  • by wrook (134116) on Sunday May 20, 2012 @04:25AM (#40055745) Homepage

    I have no problem with researchers using my data to help with their research. I *do* have a problem if they receive a patent based on my data. I'm quite happy to have them do whatever research they want, but I don't like the idea that they will get exclusivity for something that was derived from something I gave them for free.

    Can we have a copyleft for our medical data? You can use it, but only if the result is free (as in freedom) to use.

  • Re:Hard to Swallow (Score:2, Insightful)

    by Anonymous Coward on Sunday May 20, 2012 @05:08AM (#40055853)

    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

    This just made sex a whole lot more complicated.

    And that's the thing. You can have all the consent forms in the world but, with full genome sequencing dropping to about $1,000/genome, in a couple years getting someone's genome sequence is going to be about as difficult as getting their finger prints.

    That's not to say that their shouldn't be some level of informed consent but it has to be weighed against the costs. For example, let's say you've got a kid with mild mental retardation (or motor skills deficit or whatever) and you'd like to know whether it's genetic and whether there's anything that can be done (in some, rare, case there actually is). Anyway, if it is a genetic condition (the kid wasn't just dropped on his head as a baby) then more often than not it's going to be caused by a complex combination of defective genes - e.g. you married someone from the same town who happened to be a distant cousin - or you just got really unlucky.

    But... in rare cases it's actually going to be possible to pin the condition down to a specific defective gene. And, here's the problem, there's still a huge number of genes in the human genome that are not well studied and/or annotated. So, chances are, even if you pin down the gene, the genetic counselor/doctor you're working with won't be able to do much.

    The good news is that there are research groups who study specific genes and/or who are very good at using bioinformatics to determine the function of unknown genes. So if you had a families with defects is specific, poorly understood, genes then such researchers could search the database for genes that they were experts in. Or they could even use the database to identify genes with medical relevance for further study.

    But if you encumber the data with all kinds of insane informed consent requirements then, realistically it's just not going to happen. So, ultimately, families with rare genetic conditions are going to have to choose between privacy and the chance of having their disease studied, cured, etc. Or, maybe the state of California will take that choice awaya from families in California - which is not to say that informed consent is bad - just that one has to be very careful here.

Those who do things in a noble spirit of self-sacrifice are to be avoided at all costs. -- N. Alexander.

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