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Biotech Medicine Science

100,000 Californians To Be Gene Sequenced 176

Posted by Soulskill
from the homing-in-on-the-prius-gene dept.
eldavojohn writes "A hundred thousand elderly Californians (average age 65) will be gene sequenced by the state using samples of their saliva. This will be the first time such a large group has had their genes sequenced, and it is hoped to be a goldmine for genetic maladies — from cardiovascular diseases to diabetes to even the diseases associated with aging. Kaiser Permanente patients will be involved, and they are aiming to have half a million samples ready by 2013. Let's hope that they got permission from the patients' doctors first."
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100,000 Californians To Be Gene Sequenced

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  • by jamstar7 (694492) on Wednesday October 21, 2009 @12:37PM (#29824787)
    I don't live in California. Just what I need, some company taking and patenting my genetic sequence and suing me for using it.
  • by Anonymous Coward on Wednesday October 21, 2009 @12:46PM (#29824943)

    Which is one of the big reasons for single payer insurance and insurance that can't be denied. Single payer system would negate the benefits of excluding people based on their DNA, and instead would allow people who might have a chance of something going wrong to actually get insurance.

  • by icebrain (944107) on Wednesday October 21, 2009 @12:54PM (#29825043)

    Yeah, let's hope they got the doctors' permission, because, you know, it's not like the patients have a say in it or anything...

  • by Anonymous Coward on Wednesday October 21, 2009 @12:56PM (#29825067)

    I wish to extend my previous comment.. It would also be highly beneficial to know your own genome. If you don't want to be sequenced because you are afraid that your insurance company might get a hold of it, regardless of what is actually in there, that is a huge impediment to your health. You should be able to know statistics based on individual genes rather than on population statistics, or racial, gender statistics. This would make possible causes of disease and treatments much more easy to diagnose and distribute. Essentially it leads to more information that leads to a better solution. But essentially we are all afraid of this information because of the fact that you can be discriminated because of it. Taking away the insurance costs for someone that has a predisposition eliminates a large reason to be afraid of this information getting out. It is amazing that we could want to keep potentially life saving information secret because it is possible to hold it against you. There have to be ways to fix this problem.

  • by interkin3tic (1469267) on Wednesday October 21, 2009 @12:57PM (#29825095)

    Don't consider yourself safe just yet:

    "This is a force multiplier with respect to genome-wide association studies," says Cathy Schaefer, a research scientist at Kaiser Permanente, a health-care provider based in Oakland, CA, whose patients will be involved...
    Kaiser Permanente is meanwhile trying to expand its collection of biological samples to 500,000 by 2013.

    While the scientists running the experiment are clearly doing this to actually advance research, and it will, I'm thinking someone at Kaiser is hoping this will pave the way for "You want health insurance? We just need to sequence your genome first. Oh, sorry, you're going to get Huntingtons disease. Good luck with that."

  • by Red Flayer (890720) on Wednesday October 21, 2009 @01:04PM (#29825191) Journal

    That's only "bad" if you turn out to be predisposed, in which case your higher risk will no longer be subsidized and you'll have to pay fair premiums in proportion to your risk.

    Thereby making the cost of insurance prohibitive to those with genetic predisposition to serious, expensive-to-treat maladies. This works out exactly the same as denying those people insurance coverage, unless they are very wealthy.
    This defeats the general purpose of medical insurance (which IS for the healthy to subsidize the sick).

    From a libertarian standpoint (yours, I'm assuming, from prior discussions), why not just get rid of health insurance altogether? That's the only way to ensure that everyone pays their "fair" costs into the system. That seems to be what you're getting at, so why mince words?

  • by Idiomatick (976696) on Wednesday October 21, 2009 @01:09PM (#29825271)
    God I hope you guys get your healthcare shit together before that happens. In a modern country the data could be used to save lives... In the US I can only see it saving money and costing many thousands of lives.
  • by BlowHole666 (1152399) on Wednesday October 21, 2009 @01:16PM (#29825333)
    Prove we are overpopulated. Did someone find an Earth manual someplace that says only 7billion humans can be supported? I am sure wise ass will come back and say "We are overpopulated because people are starving in ". Well people starve in American and Americans are considered some of the fattest. So I think maybe we are not overpopulated we just have a food delivery problem.
  • by Manip (656104) on Wednesday October 21, 2009 @01:21PM (#29825441)

    The article seems to gloss over this BIG question.... Did they get the patients permission before they scan in their DNA and link it into their medical records?

    If they didn't or aren't, then that is a big privacy violation with perhaps huge negative ramifications for those individuals (if any diseases are identified that aren't treatable but will impact their ability to get insurance).

    Also breaks the doctor/patient trust entirely since your doctor is more or less stealing from you...

  • by SecurityGuy (217807) on Wednesday October 21, 2009 @01:25PM (#29825513)

    Or for the patients children. I can see being in my later years and really not caring, since I'll presumably be on the federal dole (Medicare/Medicaid/Whatever) by then, but this data is also predictive of the patients children and grandchildren. Much as I can see the value in the research, this is a monstrous can of worms. Patient consent should be required at a minimum, and prohibitions on genetic discrimination are going to be required as well.

  • by irondonkey (1137243) on Wednesday October 21, 2009 @01:29PM (#29825575)
    And of course, nothing illegal is ever done.
  • Yay for privacy (Score:1, Insightful)

    by Anonymous Coward on Wednesday October 21, 2009 @01:39PM (#29825741)

    The effort will make use of existing saliva samples taken from California patients, whose average age is 65. Their DNA will be analyzed for 700,000 genetic variations called single-nucleotide polymorphisms, or SNPs, using array analysis technology from Affymetrix in Santa Clara, CA. Through the National Institutes of Health (NIH), the resulting information will be available to other researchers, along with a trove of patient data including patients' Kaiser Permanente electronic health records, information about the air and water quality in their neighborhoods, and surveys about their lifestyles.

    And people wonder why I hate electronic records.

  • Re:Other countries (Score:4, Insightful)

    by Schickeneder (1454639) on Wednesday October 21, 2009 @01:50PM (#29825901)

    You have universal healthcare in Sweden, so all the citizens should theoretically get equal/fair treatment anyway. People in America aren't generally afraid of having that "personal" information known, rather they worry about the possible consequences of private healthcare providers and employers accessing that data and discriminating.

  • by element-o.p. (939033) on Wednesday October 21, 2009 @01:59PM (#29826059) Homepage
    Awesome. I can see it now: those who actually need health insurance will be unable to get any. Those who will be making payments for the next n decades, but rarely -- if ever -- actually obtaining any benefit from the insurance will be the only ones who will qualify for coverage.
  • by bzipitidoo (647217) <bzipitidoo@yahoo.com> on Wednesday October 21, 2009 @02:01PM (#29826103) Journal

    Knowledge is power. All in all, it's good that we are learning about ourselves. Ultimately it gives us more choices.

    But power always cuts two ways. Insurance companies won't be able to resist the temptation to abuse this knowledge. Though they aren't qualified, they'll pass judgment on genes, deciding which ones are "bad" and "good". They'll take a lot of shades of gray and paint them black and white, and they won't get it right. Suppose they find something like a correlation between baldness and skin cancer? Suddenly, being bald might be "bad". There's too much chance that those of us so unfortunate as to have "bad" genes will be punished for it. Also possible is the use of it to make certain no one can be right. Those who've had a bit of bad luck-- injured in an accident, say-- might suddenly be informed that they've been found to have some genetic condition that voids their coverage. For those whose conditions really are debilitating, that's punishment enough without some faceless committee sitting in judgment and further reducing their chances because they've been judged not a good bet.

    We so need a system where such judgments are not needlessly harsh and incentives needlessly perverse. Too many cures are overlooked in favor of much more profitable chronic care needed to handle symptoms. For instance, the standard treatment for high blood pressure is to take medication-- daily, for the rest of your life. Life and evolution are quite harsh enough, we don't need Neo-Eugenics.

  • by sjames (1099) on Wednesday October 21, 2009 @02:02PM (#29826127) Homepage

    You can claim Godwin if you want, but the topic is so close to eugenics and eliminating the untermensch anyway, it's hard to avoid.

    What do you propose that those people whose premiums woud be impossibly high (or who are insurance pariahs) should do? Euthanasia? (illegal anyway).

  • by ishobo (160209) on Wednesday October 21, 2009 @02:05PM (#29826171)

    From a libertarian standpoint (yours, I'm assuming, from prior discussions), why not just get rid of health insurance altogether? That's the only way to ensure that everyone pays their "fair" costs into the system. That seems to be what you're getting at, so why mince words?

    Bravo. Any free market libertarian should not be using any type of insurance. Afterall, insurance is a form of wealth redistribution.

  • by JesseMcDonald (536341) on Wednesday October 21, 2009 @02:39PM (#29826695) Homepage

    Any free market libertarian should not be using any type of insurance. Afterall, insurance is a form of wealth redistribution.

    This demonstrates a profound misunderstanding of both the concept of "wealth redistribution" in respect to libertarian philosophy and the concept of insurance itself.

    First, insurance is not "wealth redistribution" even in the limited sense described below, at least when it's not actually being turned into some sort of forced-"charity" scheme via regulation. The projected value of an insurance subscription is equal to the projected value of the premiums being paid (less overhead and the insurer's profit margin, of course, just as with any other service). You're neither subsidizing nor being subsidized by your fellow insurees. What you get from insurance—what makes it worthwhile enough to justify the overhead—is that people tend to prefer that their future costs be predictable. Insurance takes a high-cost, low-probability future event and, by pooling it with many similar events, turns it into a low-cost, predictable event in the form of periodic insurance premiums. Critically, risk is conserved with respect to each insuree; no one pays extra to subsidize anyone else's above-average projected cost (risk). In retrospect, of course, some will be compensated more than others depending on the actual circumstances, but ex ante no insurees can be said to benefit at others' expense.

    Second, "wealth redistribution" is only a problem when it's involuntary. Donating to charity is perfectly consistent with libertarian philosophy, and something many libertarians do frequently. When libertarians speak negatively of "wealth redistribution" they're referring to redistribution by force, involuntarily, which is an entirely separate matter. The force is what makes it wrong, not the redistribution.

  • by HiThere (15173) <charleshixsn@ear ... t ['hli' in gap]> on Wednesday October 21, 2009 @04:13PM (#29827979)

    And no company would ever break a law to increase it's profits.

  • by bluej100 (1039080) on Wednesday October 21, 2009 @04:17PM (#29828037) Homepage
    Insurance is for amortizing risk over time and population. Knowing the degree of risk makes it better insurance, not worse--it's not illegal to charge higher car insurance rates to people who are bad drivers. It's the role of the government to redistribute wealth to those who've gotten a crappy start, not the role of insurance firms. (And I dispute the notion that those unfortunates who share our nationality should be our first moral responsibility.)
  • by causality (777677) on Wednesday October 21, 2009 @07:45PM (#29830293)

    From a libertarian standpoint (yours, I'm assuming, from prior discussions), why not just get rid of health insurance altogether? That's the only way to ensure that everyone pays their "fair" costs into the system. That seems to be what you're getting at, so why mince words?

    Bravo. Any free market libertarian should not be using any type of insurance. Afterall, insurance is a form of wealth redistribution.

    Many others have corrected you in basic terms of what insurance actually is, and when the redistribution of wealth is undesirable (i.e. when it's done by force).

    I wanted to add one thing. Insurance of any kind is based on the principle of indemnity. This is a fundamental concept behind all forms of insurance. To summarize indemnity, it means restoring you to where you were (i.e. after a loss). It means that a policyholder does not profit from filing an insurance claim. If your car takes $5000 in damages from an accident, and your insurance company pays $5000 for your car, X dollars to cover your rental vehicle while your car is being repaired, etc., your net gain is zero. You are only paid because you incurred a covered loss, and are only paid the amount that the covered loss has cost you. That's indemnity.

"Mach was the greatest intellectual fraud in the last ten years." "What about X?" "I said `intellectual'." ;login, 9/1990

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