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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 lewko (195646) on Saturday May 19, 2012 @09:37PM (#40054883) Homepage

    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.

    • by Anonymous Coward

      And we won't be able to test for conditions like this. [youtube.com]

    • by santax (1541065)
      Since both you and I are posting here, this is probably relevant to our interests, but still none of our concern.
    • all we really need is a law saying that a person cannot sign away their genetic code and that a corporation cannot patent human genes. we need to punish big pharm not hospitals trying to determine whose the baby daddy.
      • by khallow (566160)

        we need to punish big pharm not hospitals trying to determine whose the baby daddy.

        We don't need to "punish" anyone who's obeying the law. If there's a problem, change the law not try to come up with punishment after the fact (which in itself is unconstitutional in the US) for legal activity.

        • If there's a problem, change the law...

          And changing the law is exactly what's under consideration here. May I direct your attention to the fine headline. Thank you.

          • by khallow (566160)

            And changing the law is exactly what's under consideration here.

            Not according to the person I replied to.

    • Re: (Score:2, Insightful)

      by Anonymous Coward

      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

      • Scientists seem to only think about the consequences of actions as they relate to their own research. Unfortunately, and although with the noblest of intentions, they often suffer from ivory tower syndrome and don't consider the implications of their research in a wider general context. No-one is stopping them from researching. The only thing that is happening here is something that seems to be rather new and refreshing: the general populace is finally attaching some ethical restrictions to the work.

        The hu

      • by Ihmhi (1206036)

        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.

        Right, because logic and ethics factor in when companies are being discriminatory.

        "Our medical research division says there's a chance this gene causes cancer, so we're not going to hire you. Our insurance rates will skyrocket. Have a nice day."

  • by jbeach (852844) on Saturday May 19, 2012 @09:43PM (#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 Shavano (2541114) on Saturday May 19, 2012 @10:03PM (#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 TubeSteak (669689) on Saturday May 19, 2012 @10:08PM (#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 macraig (621737)

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

          FTFY.

        • Re: (Score:3, Insightful)

          by davester666 (731373)

          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 rtb61 (674572) on Sunday May 20, 2012 @03:19AM (#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.

          • by Anonymous Coward

            ... some genetic traits can be secret but others should be divulged ...

            This is an old question. Watch the movie 'Gattica'.

          • 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.

            Thank you for perfectly illustrating the danger here.

            There is no genetic trait that corresponds one-to-one with psychopathy. There may (or may not) be certain genetic traits associated with a increased risk of psychopathy. As this distinction is pretty much lost on the general public, it is important that we do on brand people who have a greater

            • by rtb61 (674572)

              Actually there is, in fact two specific traits for two types of psychopathy and no one absolutely no one should be spared the chance of avoiding entanglement with a psychopath. If your at all worried there is an infallible test with a 100% success rate that psychopaths can not cheat on for confirmation. Only psychopaths defend psychopaths it's always a trap.

        • by wrook (134116) on Sunday May 20, 2012 @03:25AM (#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.

          • Wish I had mod points.

            It's fine with me if my DNA is used to help research. It's NOT fine with me if my DNA is used to get a patent.

          • TFA of course says nothing about the lost profits to genetic researchers who may no longer being able to patent parts of your genome without your consent. Their concern over the totally inflated number of $500K/year in administrative costs is sickening.

            In reality, the cost wont be in filing the forms. The cost will be in explaining to every patent who has blood drawn that the hospital wants to "own" your blood, including any patents that can be made on it, or cell lines that could be derived from it. The

            • by RDW (41497) on Sunday May 20, 2012 @06:32AM (#40056207)

              Their concern over the totally inflated number of $500K/year in administrative costs is sickening.

              If anything, translating this to a $500k admin cost grossly underestimates the impact on research. Many types of work will become completely unworkable in California, if TFA is accurate:

              "Under the newly proposed bill, a person's genetic information may only be accessed by individuals specifically named on a consent form, and only for purposes written on the form. Genetic information along with the original samples must be destroyed once their specified purposes are fulfilled."

              We routinely run genetic tests, all the way up to whole exomes, on tumour and normal samples from a collection donated by thousands of different patients (anonymous to us). Most ot the people curently working in our lab (not to mention collaborators in other labs) had not even joined when the bulk of the samples were collected. It would be completely impractical to seek fresh consent from every relevant patient whenever a new researcher needed to run a test or access a piece of data. It would be a tragic waste to destroy data and precious samples prematurely (and usually against the wishes of the donors, who typically want us to do all we can with the material).

              Far from being worried about 'lost profits', many researchers share your concern about gene patents (and very few profit from them directly!). But this is not the way to the address the problem - we need reform of the patent system, not unduly restrictive 'DNA privacy' laws.

              It just kills me that I wont get a copy of my data.

              Usually you'll be anonymous to the people with access to the raw exome data, and there's probably no mechanism for feeding it back to a named donor. This type of research will also be subject to a strict legal and ethical framework which will not permit the researchers to act as providers of genetic tests to named individuals. If you want an exome you'll probably have to get it done privately - should be about the price of a mid-range laptop right now, with whole genomes falling into this range within a couple of years. How useful it will actually be to you at this point is unclear, unless you happen to have a condition with a simple and well-defined genetic association. Note also that comparisons with anyone else's data will not be possible if DNA privacy laws become so strict that public databases can't be created in the first place...

              • This type of research will also be subject to a strict legal and ethical framework which will not permit the researchers to act as providers of genetic tests to named individuals.

                This is indeed the case currently, but I think that's wrong. If you're expecting donors to go out on a limb and sign a blanket consent form allowing their samples to be used for honest research purposes, there should be a reciprocal way for us to provide data back to them. It will require yet another consent form or other legal framework, but putting in effort to make that possible seems only fair.

              • Thanks for the we informed reply. Obviously genetic databases need to be built and shared. The 1000 genome project is amazing. As software patents continue to damage America's software industry on the whole, with no real action to improve the situation over the last 20 years, I'm afraid I have no confidence in the patent system. In the end, they always seem to allow any sort of patent that well financed companies want.

                So rather than junk this bill, I'm hoping they patch it. Informed consent is a pretty

              • by ffflala (793437)

                We routinely run genetic tests, all the way up to whole exomes, on tumour and normal samples from a collection donated by thousands of different patients (anonymous to us). Most ot the people curently working in our lab (not to mention collaborators in other labs) had not even joined when the bulk of the samples were collected. It would be completely impractical to seek fresh consent from every relevant patient whenever a new researcher needed to run a test or access a piece of data. It would be a tragic waste to destroy data and precious samples prematurely (and usually against the wishes of the donors, who typically want us to do all we can with the material).

                Would a grandfather clause that allowed for the testing of already-collected samples, and require the consent form for all future samples, address your concern?

        • by laffer1 (701823)

          > 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.

          We're not talking about the field of medicine, we're talking about the profit center of medicine, the drug companies. This makes it harder for Pfizer researchers to come out with new useless drugs to grow hair or any number of other things.

          • We're not talking about the field of medicine, we're talking about the profit center of medicine, the drug companies.

            While this does affect big pharma a little bit, the vast majority of genetic testing for association currently occurs in academic settings. This bill has the potential for significantly increasing the difficulty of determining which genetic variants cause important diseases, reducing the ability of researchers in California to participate in research in this field.

            • by zlives (2009072)

              so pharma's are ok with saying that results from this research can NEVER be wholly or partially copyrighted/patented. or that the university will not directly or indirectly profit from this research and all data will be made public... and lets include the insurance companies in here as well...

              • this research can NEVER be wholly or partially copyrighted/patented. or that the university will not directly or indirectly profit from this research and all data will be made public...

                First off, facts cannot be copyrighted. Secondly, in a university setting, research results are generally made publicly available in journal articles, and you can often request the data if you have a legitimate reason to get access to it. Raw data will almost never be made public (although it is often made available to other

    • by Bieeanda (961632) on Saturday May 19, 2012 @10:07PM (#40054993)
      Yeah. I'm sure I echo the family of Henrietta Lacks when I say 'Fuck 'em.'
      • by macraig (621737)

        You know I modded your comment up, but then got stupid and commented elsewhere and negated my own modding. Hopefully someone else can make up for my goof.

      • by nbauman (624611)

        Henrietta Lacks got the best treatment available at the time, free, and unfortunately it couldn't save her. In exchange, the doctors used a sample of her tumor to save patients in the future. What's wrong with that?

        People live a lot longer these days, because of research like this. Do you want to go back to medicine as it was in 1900?

        • Re: (Score:2, Informative)

          by Anonymous Coward

          The fact that those doctors are making *MONEY* off it, and her and her family aren't? If it was non-profit and shared with all who needed it, maybe, but as a big money business the HL cell cultures are an insult to 'supposed' medical ethics everywhere. Nevermind that they didn't ask for permission, and it was only revealed... what, 20-30 years later?!??!

          And saying this as a white dude: Just another example of the rich white upper class screwing those below them for their own benefit.

          • The fact that those doctors are making *MONEY* off it, and her and her family aren't? If it was non-profit and shared with all who needed it, maybe, but as a big money business the HL cell cultures are an insult to 'supposed' medical ethics everywhere.

            You're mistaken. HeLa cells are banked by ATCC, which is a non-profit organization which provides the cells to other cell banks which provide them to researchers at cost. The cells themselves are typically not sold for profit. [They are expensive, but that's b

    • by Baloroth (2370816) on Saturday May 19, 2012 @10:41PM (#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 nbauman (624611) on Saturday May 19, 2012 @11:39PM (#40055273) Homepage Journal

        I once read a study done in Sweden to find out how accurate a prostate cancer test was.

        30 years ago, they had done a study of cholesterol, and saved the blood samples. So they could go back, thaw out the blood samples, and see what the PSA level was. Then using Sweden's wonderful medical records, they could find out how many of them had died of prostate cancer at each level of PSA.

        This was very useful. If you go to a doctor, and he tells you you have an elevated PSA, you want to know whether it's something you can safely ignore or whether you have to get surgery (which leaves you impotent about half the time and with urinary incontinence about half the time).

        If they had laws like the ones proposed here, they just couldn't have done it. It's one thing to have a collection of 100,000 blood samples that you can feed into an automated testing machine. Its another thing entirely (and much more expensive) to have to track down 100,000 subjects from a 30-year-old research project, many of whom have died (including the very people whose blood is most important to test).

        Or suppose you turn 60 years old and go to the doctor for a routine exam. Your blood test results come back and he tells you you have chronic lymphocytic leukema. Some people die in 6 years. Other people die in 30 years. He can't tell how long you've got.

        Well, now he can tell how long you've got. There's a DNA test. People with one mutation live 6 years, and people with another mutation live 30 years.

        Obviously they didn't get signed permission from people with leukemia to test their DNA and follow them for 30 years. They went back and tested stored blood samples of people who died after 6 years and people who died after 30 years.

        I don't want to oversell genetic studies. They're at a very early stage. But there are a lot of successful results. Doctors can tell who needs dangerous, debilitating medication in order to have a chance to live a little longer, and who can just skip the medication. They can get clues to new drugs. There are great promising results too complicated to explain here. But if they had to go through these specific informed consent forms described in the Nature article, they simply couldn't do it. It's like prohibiting stem cell research.

        • by martin-boundary (547041) on Sunday May 20, 2012 @12:21AM (#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 nbauman (624611)

            What abuses are you subject to if you join a medical study that gives you the best treatment available and also studies your outcomes?

            If you go to the doctor with a life-threatening disease like cancer or heart failure, you want the best treatment available, based on the experience of doctors treating this disease over the last hundred years. You're benefiting from their spending the last hundred years recording the records of patients, and aggregating them for study.

            The death rate from heart disease is abo

            • What abuses are you subject to if you join a medical study that gives you the best treatment available and also studies your outcomes?

              If your privacy is breached, your future insurance rates can unfairly suffer, you can be denied other treatments, your genes can be patented by companies causing increased costs for other researchers later, your relatives can be identified as being higher risk (therefore higher premiums for them as well etc). That's just medically. Your mortgage rates and loan approval

              • by vakuona (788200)

                Then make laws disallowing the use of genetic testing, or any medical testing in general, for setting premium rates. Insurance companies won't mind. As long as there are no loopholes allowing other competitors to use such information. Hell, it might even reduce their costs. The issue with such blanket privacy laws is that they will always have unintended consequences, and the only people who benefit are lawyers, who get to sue and try the cases that will inevitably result.

                • The issue with such blanket privacy laws is that they will always have unintended consequences, and the only people who benefit are lawyers, who get to sue and try the cases that will inevitably result.

                  That makes no sense. A blanket law has no loopholes, it applies to everything. It's specific laws like you suggest here that are riddled with loopholes:

                  Then make laws disallowing the use of genetic testing, or any medical testing in general, for setting premium rates.

                  Let me count the loopholes:

                • by Rich0 (548339)

                  Then make laws disallowing the use of genetic testing, or any medical testing in general, for setting premium rates.

                  That is impossible to enforce. Sure, it makes it hard to systematically discriminate, but it is impossible to know what criteria some individual used when making a decision. You need to hire somebody. You have 50 applications, and 10 qualified applicants. You pick 1 and discard 9. You don't tell any of them anything but "you're hired" or "sorry." How do the 9 know whether you used genetic information to discriminate against them?

                  Insurance companies won't mind.

                  Uh, insurance companies won't mind not having access to information that

                  • I think socialism is about the only likely outcome of all of this

                    What in the world does an economic system based where workers and the people, rather than a state-backed owning class, control the means of production, have to do with anything under discussion here? Or do you just have no idea what "socialism" means?

                    • by Rich0 (548339)

                      I used "socialism" in the sense that 99% of people reading my post would understand. Feel free to substitute whatever you feel the appropriate term is accordingly when you read it. If you still don't understand my post, then pretend that you didn't read it. :)

                      Quibbling over definitions is about as productive as debating proper grammar.

                    • by nbauman (624611)

                      You used "socialism" like the right wing uses it, as an epithet you don't understand, in a different way than the history and economics textbooks use it, to invoke a generalized fear of government, and confuse the issues. That's why they call Obama a "socialist".

                      You're not using it in the sense that 99% of the readers understand it, if those readers ever understood a high school history or economics class.

                      It certainly is productive to have precise definitions. Otherwise, you can't communicate. Everybody els

                    • by Rich0 (548339)

                      Under socialism, there are no private health insurance companies, so you don't pay premiums and no one raises your premiums.

                      Yup, hence the reason I suggested that socialism was inevitable - private insurance simply won't be able to exist. Not because somebody outlawed it, but because it just isn't financially viable - nobody will buy it, because everybody will either not need it or not be able to afford it. As a result we'll either be living in a socialized world, or one where we just let people die on the streets.

                      When you talk about socialism like that, you send a strong signal that you don't understand the issues.

                      Like what? You haven't pointed out whatever it was that I said that you're apparently bothered by. It seems to m

                  • by vakuona (788200)

                    There is no decision to make. If you are an insurance company, you must accept all applicants at the standard rates. The terms must be identical for Bill Gates as they are for someone drug dealer in Harlem. The concept of disallowing medical testing for medical insurance is not new. It is well established. Look up "Community Rating". It is practiced in very many countries, including in the USA!

                    • by Rich0 (548339)

                      There is no decision to make. If you are an insurance company, you must accept all applicants at the standard rates.

                      It doesn't matter. The standard rates will be 10 million dollars a year, or the company won't offer service to anybody if they can avoid it. If you legislate the rates, then only sick people will sign up, and the company simply goes out of business. Any way you slice it there won't be private insurance.

                      Remember - the potential customer already knows how long they're going to live (I said that insurance wouldn't work IF you could prick your finger and know your life expectancy). If they know they'll live

      • ...without looking at the specific provisions and language of the bill you cannot tell whether or not the restrictions placed are reasonable.

        For once, the draft of the proposed law is linked directly from the Slashdot description. It's still pretty rough around the edges, but I personally can't see anything wrong with it. Can you?

        The one part it doesn't mention is life insurance. Life insurance is such a tricky subject when it comes to dna privacy. When the last dna anti-discrimination law was passed in the US and signed into law by President Bush, health insurance was specifically included, but life insurance was specifically excluded from its

    • I can't help but wonder what the ramifications will be for health care. Are they going to start offering discounts on insurance premiums for people who sign away their DNA for study?

  • Seriously that's like chump change to the UC system...
    • by Shavano (2541114)

      If it costs them more than 10% of that, they're not handling it right.

      • Don't forget that 500k only seems like a lot to a individual. 500k to the 7th largest economy in the world (go Cali!) is negligible.

        In perspective:
        Thats the cost of 7 (maybe less) UC bachelors degrees.

        On the national news scale... 12 million on DOJ muffins? Negligible. 300 BILLION on a new fighter jet when we already rock. 100:1 DR? Absurd.... and yet thatsnot as newsworthy as muffins....

        • Frikkin smartphones....

          It should say "...rock a 100:1 KDR..." thats kill to death ratio for non gamers...

    • by geekmux (1040042)

      Seriously that's like chump change to the UC system...

      Congratulations. You just re-affirmed how a state can manage to get over $600 billion in debt. Like my old boss used to say, a million here, a million there...pretty soon, we're talking about real money.

    • by pesho (843750)
      Yep. It's way less than they pay their president (~ $800K including perks)
  • by davidwr (791652) on Saturday May 19, 2012 @10:02PM (#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.

    • These are all good steps. For me, though, the main issue with DNA testing of criminal suspects is its unreliability. Hopefully as sequencing costs continue to fall rigorous testing will become required.

      • When done properly, the test can reliably tell you the only thing it is designed to tell you:

        That the specific tested portions of the DNA in the tested/crime-scene sample match or do not match the reference/suspect's sample, and if they do not match, it can tell you which specific portions match or do not match.

        What it cannot do:

        * Determine how the DNA got into the test sample - was the crime scene sample contaminated post-collection?
        * Whether the presence of the DNA at the crime scene is a likely indicator

      • rigorous testing will become required.

        Any testing that is not rigorous should never be used in court unless it can be proven that the lack of rigor made no difference in the result that the court was interested in.

        Any time shoddy forensics is used in court, it sets up grounds for appeal.

        • Current forensic DNA analysis uses a subset of markers whose size is determined by economics and scientific feasibility. To obtain really rigorous results, a large number of markers is required. As costs come down and techniques improved, my hope is that the marker libraries used in forensics will become large enough that results can be considered to be truly reliable.

          Do courts typically ask for multiple laboratories to corroborate tests? Do they have side-by-side controls run alongside every sample tested?

          • by davidwr (791652)

            Except for the question on informed juries and judges, the objections you raise apply almost identically to any forensic lab and technique, and are not specific to DNA. Any lab test done under conditions that later throw doubt on the reliability of the test, such as a lab that is later found to be sloppy, can easily cast doubt on all cases in which that evidence was used.

            Are judges and juries informed of the sizes of the marker libraries and the accuracy rates implied by those sizes?

            In most forensic sciences, if it's "accepted by science" that a properly-done forensic test with a specific result, e.g. matching a well-

  • by markdavis (642305) on Saturday May 19, 2012 @10:12PM (#40055015)

    >"would require an individual's written consent for the collection, analysis, retention, and sharing of his or her genetic informationâ"including DNA, genetic test results, and even family disease history."

    Unless, of course, it is the government taking the samples on people just ACCUSED of a crime. And that information will never be wiped and will be stored and forwarded to every shady agency that wants it..... in the name of keeping us safe from terrorists. Just like fingerprints.

    Doesn't matter. Such legislation would never pass, and even if it did, it is just California and has nothing on the Fed.

  • by EnsilZah (575600) <EnsilZah.Gmail@com> on Saturday May 19, 2012 @10:16PM (#40055021)

    DNA is known to the State of California to cause cancer and birth defects or other reproductive harm.

    • No, no. Since everything appears to cause cancer and other nasty effects in California, the first thing you should consider is whether California is in fact the cause.
  • I have to ask why written consent is going to cost the university $594,000 annually. Surely, one of their law students could draft a consent letter to be reviewed by a practicing lawyer - maybe one already on staff. That should only cost a few hundred dollars - maybe a couple of thousand if the lawyer is famous and expensive. Then there is the cost of a filing cabinet to store the letters. Maybe paper for photocopies. And Say 15 minutes per client in time to print, collect the signature and file the do
    • by Anonymous Coward

      I have to ask why written consent is going to cost the university $594,000 annually. Surely, one of their law students could draft a consent letter to be reviewed by a practicing lawyer - maybe one already on staff. That should only cost a few hundred dollars - maybe a couple of thousand if the lawyer is famous and expensive. Then there is the cost of a filing cabinet to store the letters. Maybe paper for photocopies. And Say 15 minutes per client in time to print, collect the signature and file the document. Surely that can not cost more than $10,000 a year. If it was run by a government, I could see it a little higher, but not 60 times that amount.

      As written, it requires every researcher/reviewer to be enumerated in the consent form. Take the number of dna samples analyzed multiplied with the number of researchers and reviewers and that's how many consent letters you need. If you want lawyers to review the consent letters, add them into the mix.

      Now, add the paper trail to every sample/study so that you send out a new consent letter anytime someone new interacts with the sample or data and you have the ridiculous costs.

      While privacy is a good thing,

      • by Anonymous Coward

        I was chatting with Sydney Brenner a while back about administration in science and he was recommending a "notwithstanding rule". Something to the effect that you would have a clear set of policies and procedures - but that, these policies and procedures notwithstanding, it would be possible to have reasonable exemptions.

        So, with respect to the proposed law, as millions and millions of people have their genomes sequenced, there are going to be thousand and thousands of new associations found between genetic

  • by Okian Warrior (537106) on Saturday May 19, 2012 @11:04PM (#40055203) 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.

    So, to paraphrase: "Let's not protect peoples' rights! It will cost us money! And it will come out of the general fund! WAAAAAAH"

    Gimme a break. California will *always* want more money, will always be strapped for cash, and sacrificing morality for expediency is an argument that could be used to avoid all responsibility and fairness.

    Balance your budget, reduce your spending, and grow some backbone. Let your people live in privacy and safety.

  • by pesho (843750) on Saturday May 19, 2012 @11:51PM (#40055307)
    Research subject consent and the associated paperwork is already required by ethics rules that are strictly enforced in US. I am not aware of signal study in US that does not do that. In fact the US government and all private sponsors of research that I know of will not fund such studies. From what I see most of the law is just formalizing the status quo. The only silly thing is the requirement that only people named in the original consent from will be allowed to access the information. I am sure that this will be ironed out before the law goes into effect. Usually there is tiered access to such data that allows data that can not directly identify a person to be shared, while protecting information that can harm the privacy of the individual. My guess is that the bill is aimed against 'ancestry' web sites that also offer genetic testing and can do as they please with your genetic information according to their typical EULAs.
  • by Grayhand (2610049) on Sunday May 20, 2012 @12:17AM (#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.
  • good in concept (Score:5, Informative)

    by Gravis Zero (934156) on Sunday May 20, 2012 @02:20AM (#40055631)

    the issue here is NOT about having DNA on file, it's having DNA on file that can be associated with an individual. having tons of DNA data with a full medical history's for each sample would be super awesome for research. research doesnt need names of people, just information/associations with other real world factors. however, if you can be associated with a particular sample then there are a lot of bad guys out there (and good guys with bad ideas) that would love to get their hands on that kind of information.

    i'm not ok with the government having DNA on file in a way that gives a direct association. so having DNA_Sequence=Plummer_Joe is bad. what i am ok is with them storing a hash [wikipedia.org] result using my DNA as a key. HashFunction(DNA_Sequence)=9je4H2 and Plummer_Joe=9je4H2 is ok. that way if they actually have DNA (evidence), they can look people up but they cant get DNA arbitrarily.

    also, "asking" for DNA by a company should be as illegal as the whole facebook password thing. as a precaution, i'm deleting my DNA.

    it's just too bad that the only thing a politician will understand about a hash is that they "didnt't inhale"

  • Nearly all the posts so far are about research use of genetic information. Research data should be responsibly anonymized, but privacy standards for corporate and government (read: law enforcement) use of individuals' DNA samples should be much more strictly regulated.

    I don't mind if my DNA is used for medical research, even non-anonymously, but the though of it being used by insurance companies or law enforcement is infuriating.

  • Seriously? It costs 2 cents to print the consent form and a fraction of a penny for ink in a fucking pen.

    There are things in life that are more important than the State running around collecting peoples' DNA without their consent for unknown and/or nefarious reasons.

  • This got me thinking.

    Is it possible, within today's legal framework, to sequence my own DNA and put it into written form then copyright that written form? After all, it IS unique. Would that protect me from people using my DNA in any manner that monetizes it, or, in effect, copies it?

  • And while we're on the subject, I bring up this only for perspective sake.

    http://www.govtrack.us/congress/bills/110/s1858 [govtrack.us]

    I'm sure most of you will recognize the sponsor.

    Anyway, read the summary. Everything we are talking about in this thread is moot. Any state level legislation would be trumped by this (think marijuana). This legislation requires the collection of DNA from every child born in the US, and that that data be posted, available freely, ON THE INTERNET.

    So what the fuck is UCLA whining about?

  • Problem solved if you include a phase in period of like ten years. The are mostly worried about the sticker shock of needing to immediately go out and collect signatures like the census for currently utilized samples.

    One thing I would urge the state senate to include is requiring the concent form to be a separate paper so that people are not signing off on it like a shrink wrap license every time they go in for medical care and get admitted.

  • Some of us gave samples to the Federal Government for identification in the event we were killed-in-action (KIA)? Now, I don't have access to this sample, I don't know if it still exists, and if does, where is it stored.

If you're not careful, you're going to catch something.

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