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Routine DNA Tests For Newborns Mean Looming Privacy Problems 268

Posted by timothy
from the let's-just-size-you-for-your-uniform dept.
pogopop77 writes "CNN has an interesting story about how newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent. However, many states store that DNA information indefinitely, and even make it available to researchers with little or no privacy safeguards. Sometimes even the names are attached! Here is information on state-by-state policies (PDF) of the handling of the DNA information."
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Routine DNA Tests For Newborns Mean Looming Privacy Problems

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  • No chance this will be used to solve crimes CSI-style, right?
  • GATTACA (Score:5, Interesting)

    by quantumphaze (1245466) on Friday February 05, 2010 @08:17AM (#31033640)

    It will start with insurance companies discriminating against people who are more susceptible to diseases based on DNA.

    On the plus side we can all feel safe that the caring benevolent government can track down all those pesky criminals and terrorists and pirates.

    • Re:GATTACA (Score:5, Informative)

      by MRe_nl (306212) on Friday February 05, 2010 @08:43AM (#31033808)

      http://www.genome.gov/10002328 [genome.gov]

      What's the Genetic Information Nondiscrimination Act (GINA)?

      The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The new law prevents discrimination from health insurers and employers. The President signed the act into federal law on May 21, 2008. The parts of the law relating to health insurers will take effect by May 2009, and those relating to employers will take effect by November 2009.

      Their logo even has "GATTACA" in it.

      • Re:GATTACA (Score:5, Insightful)

        by Anonymous Coward on Friday February 05, 2010 @08:50AM (#31033866)

        When did insurance companies start to care about laws? They'll just deny your application without any reasons or make one up. What makes you think their hordes of lawyers wouldn't find a way to weasel around such irrelevant laws?

      • by TheLink (130905)
        If insurance companies can still discriminate based on "pre-existing conditions" then I'm sure they can find a way to workaround the GINA thing.
        • Re: (Score:3, Interesting)

          by timeOday (582209)
          Unless everybody is required to carry insurance, exclusions for pre-existing conditions are inevitable. Otherwise everybody would just wait until they got sick to buy insurance (i.e. it wouldn't really be insurance any more).

          My understanding is the new healtcare plan would have mandated we all buy health insurance, and prevented insurance companies from excluding pre-existing conditions. For whatever faults the bill has (or had), I think making people buy health insurance (from private companies, or as

          • by Shakrai (717556)

            Unless everybody is required to carry insurance, exclusions for pre-existing conditions are inevitable. Otherwise everybody would just wait until they got sick to buy insurance (i.e. it wouldn't really be insurance any more).

            This is a bullshit argument. Can you honestly say that you envision people in the ambulance having a heart attack on the phone trying to buy health insurance? "Hey Mr. EMT, can you hold off on that oxygen mask for a minute? I gotta call my insurance agent..."

            I think making people buy health insurance (from private companies, or as a tax) is a good thing

            Yeah, except for the fact that it's blatantly unconstitutional. Of course that's never stopped the Federal Government before....

            • Re: (Score:3, Insightful)

              by ColdWetDog (752185)

              Can you honestly say that you envision people in the ambulance having a heart attack on the phone trying to buy health insurance?

              You make the implicit assumption that medical problems occur dramatically and in a short period of time. While that does happen, the usual route is much slower - over weeks to months. You have some vague symptoms, you blow them off for a bit (since you don't like doctors and besides, you don't have insurance).

              You go the the clinic and find, lo, that it's serious. You have

            • Re:GATTACA (Score:4, Informative)

              by Quikah (14419) on Friday February 05, 2010 @01:04PM (#31036916)
              General Welfare clause is a perfectly reasonable justification to the constitutionality of federally run healthcare.
          • Re:GATTACA (Score:4, Insightful)

            by BlueStrat (756137) on Friday February 05, 2010 @11:12AM (#31035286)

            Otherwise too many people fail to make provisions for the inevitable, and then fall back on the rest of us.

            See, that's where it gets dicey. Once you start down the path to limiting individual choices and freedoms for "the good of society", things just can't end well when you figure in every government's natural tendency to expand in size and scope while removing ever-more individual freedom.

            Just how much individual choice/freedom sacrificed for the "greater good" is too much? Since bad health costs more, and diet is so important, will the government mandate government-healthcare-prescribed daily diets? How about exercise? Mandatory exercise/gym membership? Traffic fines for going out in the cold without your scarf?

            Some lifestyles, sports, hobbies, etc could have a huge impact on an individuals' healthcare costs, so might they be regulated too?

            I just think America can reduce healthcare costs and take care of those without insurance without a 2,000-page purely one-party bill put together in secret backroom deals attempting to completely restructure ~20% of the US economy and having the government intruding even more on individual freedom and choice while likely actually increasing healthcare costs and the national debt with a new entitlement, reducing quality-of-care, still not insuring everybody, and not even addressing tort reform.

            Shouldn't reform actually...you know...*reform*?

            We can do much, much better.

            Strat

            • Re: (Score:3, Insightful)

              by IICV (652597)

              Yeah! Our current system is so much better than the crappy health care in Japan, Sweden, Great Britain, Canada and basically the rest of the civilized world! Also because of socialized health care, all those for'n countries have mandatory gym memberships and shoot people for being fat! And because those for'ners allowed gays in their military, they had to reinstate the draft! [scienceblogs.com]

              We should keep on doing exactly what we're doing, only more because it's working so well already!

              Or, you know, we could learn what wor

          • Re:GATTACA (Score:5, Interesting)

            by sjames (1099) on Friday February 05, 2010 @01:15PM (#31037032) Homepage

            It seems to me that rather than put the entire population through the intensive dane brammage of trying to figure out the deliberately incomprehensible insurance policies, not to mention the endless paperwork of showing that you either have insurance or can't afford it, it would make a LOT more sense to just cover everyone and be done with it.

            Truly massive amounts are wasted by forcing each and every healthcare provider to deal with each and every insurer's unique and convoluted claims process and by forcing each and every patient to show that they have insurance, determine that their particular insurance will work with that particular provider, and on and on and on.

            Then they get to deal with if you have procedure A as a result of B on a friday before the full moon at the low tide and the doctor has real plants in the waiting room, we cover 75.00030456762535646% of the bill (rounded down), except if you ever said booger before the age of 3 in which case we cover 32.7623235624784781% but only if you can hop on one foot. If you have the procedure on any other day, our percentage is based on a spin of the wheel-of-denial (better hope it doesn't land on bankrupt!)

            But if you have chronic pain, we will provide you the new FDA approved baby aspirin with cyanide!

            Honestly, it's to the point that people might seriously consider the value of "insurance insurance" to cover those times when your insurance finds a new way to let you down when you need it most.

            Howsabout instead of all of that, we just cover everyone out of the general funds and be done with it.

      • by Fred_A (10934)

        Their logo even has "GATTACA" in it.

        Wow, that's so reassuring...

      • You might want to watch the movie again. The fictional country in the film had non-genetic-discrimination laws as well, which were as routinely ignored as speed limits are now. Actually worse than speed limits, they barely even made pretense for the discrimination.

        The problem is that neither party was really wrong. There's a civil liberties issue: you don't wan't people to get stuck in an unrewarding career track with no hope of bettering themselves because of some checks on a list, but from an economic

      • by russotto (537200)

        What's the Genetic Information Nondiscrimination Act (GINA)?

        And is there an equivalent in the state of Virginia?

    • Re: (Score:2, Funny)

      by Luke Wilson (1626541)
      Did they learn nothing from that movie? A genetic screening may show propensity for a disease, but it will never measure the human spirit.
    • Re: (Score:3, Insightful)

      by alen (225700)

      no they won't, they will just price the risk in and make money on it

      medical care is becoming so expensive that a lot of employer plans where there is no prior condition clauses already have something called co-insurance where you pay 20% of the charges plus the premiums. if you want to destroy your health no one cares and no one will let you die in the street. they will just make you pay to cover the cost of your care

  • Uninsurable (Score:5, Interesting)

    by eldavojohn (898314) * <eldavojohn AT gmail DOT com> on Friday February 05, 2010 @08:21AM (#31033666) Journal
    The article touches on insurance but I fear this particular part more than the privacy concerns:

    Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.

    And if the disease is considered genetic by the medical community like Alzheimer's or even high cholesterol, is it going to affect her descendants through the ages forthcoming when they try to get insurance? Already you have people with pre-existing conditions finding it hard to get insurance [cnn.com] but I fear of a future where health care crises are addressed by increasing fees passed on to people with genetic disorders and diseases that they not only have no control over but also don't even suffer from yet.

  • by thomasdz (178114) on Friday February 05, 2010 @08:21AM (#31033668)

    Lots of people probably don't mind "the government" keeping their DNA on file, but lots of people probably DO mind private insurance companies having the DNA data:

    "Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.
    "It's really a black mark against her, and there's nothing we can do to get it off there," Brown says. "And let's say in the future they can test for a gene for schizophrenia or manic-depression and your baby tests positive -- that would be on there, too."
    Brown says if the hospital had first asked her permission to test Isabel, now 10 months old, she might have chosen to pay for it out of pocket so the results wouldn't be known to the insurance company."

    • by Anonymous Coward on Friday February 05, 2010 @08:36AM (#31033774)

      Brown says if the hospital had first asked her permission to test Isabel, now 10 months old, she might have chosen to pay for it out of pocket so the results wouldn't be known to the insurance company."

      ...which is just as bad, of course.

      The insurance business model relies upon insuring measurable, but fundamentally unknown risks.

      If you know you're going to get a condition that costs $1M to treat, you're going to want insurance against that condition. Conversely, if you know that you're not going to get any of these improbable-but-expensive conditions, (but will instead die of a nice cheap heart attack), you're better off not buying insurance in the first place.

      In the end, it will be this phenomenon - that consumers, en masse, can invest a small amount of money into a DNA test, and gain an informational advantage over the insurance company that's, actuarially speaking, worth more than the cost of the test - that kills the insurance industry as a business.

      In a world of cheap and widely-available DNA testing, it doesn't matter whether you keep the current system, or if you make coverage mandatory and have the government (the taxpayer) as the carrier of last resort. The end result is indistinguishable from single-payer.

      Unfortunately, Congress isn't interested in talking about health care reform, they're still talking about health insurance reform. The only difference is that the middleman, who can afford the lobbyists, gets a cut of the pie.

    • Re: (Score:3, Interesting)

      by sjs132 (631745)

      "Lots of people probably don't mind "the government" keeping their DNA on file....

      I mind... The last grovernment that tried to use genetics to modify it's society of illness didn't have the technology,
      so they just resorted to gassing millions of the "unfit" to protect the chosen.

      If you kill the baby before birth because of a genetic code defect, it is the same result. Just less gas and mass of bodies,
      but the results are the same. Case in point, both my children had Downs Syndrome like symptoms. If t

      • I mind... The last grovernment that tried to use genetics to modify it's society of illness didn't have the technology, so they just resorted to gassing millions of the "unfit" to protect the chosen.

        I don't think that government was the last one. Compulsory sterilization for eugenic reasons occurred more recently than that in the United States, and it wouldn't surprise me to find out that some countries have it today.

      • by Mr. Slippery (47854) <tms.infamous@net> on Friday February 05, 2010 @10:06AM (#31034580) Homepage

        The last grovernment that tried to use genetics to modify it's society of illness didn't have the technology, so they just resorted to gassing millions of the "unfit" to protect the chosen.

        The Nazis were just more vigorously implementing a eugenics concept that originated in the U.S., where compulary sterilization was carried out on over 60,000 people [hnn.us]. (The SCOTUS okayed this in Buck v. Bell, which has not been overturned [usatoday.com].)

        If you kill the baby before birth because of a genetic code defect, it is the same result. Just less gas and mass of bodies, but the results are the same.

        You can't kill a "baby" before it's born., because it's not a "baby" yet. It's a fetus, embryo, blastocyst, or zygote. The distinction is very important: selecting which of several embryos to implant in order to avoid creating a person with a genetic disorder [wikipedia.org], is not the same as killing a three month old infant.

        If the "lives" program were implemented as suggested by Rahm Emanuel then I would not have two wonderful children.

        Sorry, you lost me here. Are you suggesting that Rahm Emanuel has been advocating some sort of forced eugenics program? Link, please?

        Did they have downs? Nope, just similar gene issues, but mentally they are higher than their peers.

        What the heck is "similar" to trisomy 21? Down's syndrome is not a subtle genetic alteration, it's a whole extra copy of a chromosome.

        But I guess he wouldn't want to teach them to take responsiblities for their actions... no reason to teach that anymore.

        Aborting a fetus rather than having a baby you can't properly care for, is responsible behavior. (Of course using contraception and not getting pregnant in the first place is even more responsible.)

        • by Sique (173459)

          Aborting a fetus rather than having a baby you can't properly care for, is responsible behavior. (Of course using contraception and not getting pregnant in the first place is even more responsible.)

          But what is trying again and again and aborting the fetes until one comes along to your liking?

        • by ckaminski (82854)
          <quote>
          Aborting a fetus rather than having a baby you can't properly care for, is responsible behavior. (Of course using contraception and not getting pregnant in the first place is even more responsible.)
          </quote>

          Except contraception fails. I know of at least one mother who's in that state simply because the Pill didn't work.
      • by ckaminski (82854)
        I love it. I could see it coming true too. A society that professes to claim to value the life of the baby over the mother (the so-called Anti-abortionists) forcing a mother to get an abortion for a child she wants simply because it might be "defective."

        I love this country </sarcasm>.
    • Re: (Score:3, Interesting)

      by mcgrew (92797) *

      IMO there should be no health insurance companies. Get rid of them and have the government pay for your health care, and our costs (the highest in the world) will drop to where more civilized countries' costs are, and our health will be markedly improved. Your higher taxes will more than be made up by not having to pay insurance premiums.

      We have the most expensive health care in the world, but by no metric do we have the best care. I blame private insurance. I had hopes for Obama, but his version of health

      • by Shakrai (717556)

        Get rid of them and have the government pay for your health care, and our costs (the highest in the world) will drop to where more civilized countries' costs are, and our health will be markedly improved. Your higher taxes will more than be made up by not having to pay insurance premiums.

        And the Government will have your complete medical record on file. How long do you think it will be before they start using it for other purposes With your well known mistrust of the police I would think that having the Government involved in your health care would be the last thing that you would want....

        • And the Government will have your complete medical record on file. How long do you think it will be before they start using it for other purposes

          Well, given the inherent inefficiencies, probably not as fast as private corporations have been doing it.
        • Re: (Score:3, Interesting)

          by mcgrew (92797) *

          And the Government will have your complete medical record on file. How long do you think it will be before they start using it for other purposes

          Such as?

          With your well known mistrust of the police I would think that having the Government involved in your health care would be the last thing that you would want

          Yes, I mistrust the police and mistrust the government, but both are necessary for civilization. Other countries have government-run health care, and they have better care, are healthier, and pay a whol

      • by plague3106 (71849)

        IMO there should be no health insurance companies. Get rid of them and have the government pay for your health care, and our costs (the highest in the world) will drop to where more civilized countries' costs are

        IMO you are a free individual and are capable of moving to a "more civilezed country." So plesae, start packing your bags instead of trying to steal from me.

        Your higher taxes will more than be made up by not having to pay insurance premiums.

        Tell that to the healthy people who currently CHOOSE NOT T

  • by neurogeneticist (1631367) on Friday February 05, 2010 @08:23AM (#31033690)
    Sadly, a genotype fingerprint of just 24 well-selected markers is enough to differentiate an individual, with an error rate far lower than 1/ # of people on the planet. So while having names attached to samples is ethically deplorable, in practice it doesn't really even matter. I do genetic research, and the first thing we do is de-identify samples in the database. When we get samples from other sites with names still on them, we get pissed at the site. It's just sloppy, and certainly doesn't help the research.
  • HIPAA (Score:5, Interesting)

    by Anonymous Coward on Friday February 05, 2010 @08:31AM (#31033726)
    At a minimum, HIPAA should apply http://www.hhs.gov/ocr/privacy/ [hhs.gov]
  • At least one state, Texas, allows parents to opt out of the screenings.

  • In Canada (Score:3, Interesting)

    by mario_grgic (515333) on Friday February 05, 2010 @08:44AM (#31033820)

    the information is kept by a private entity, not even government. Also, most hospitals collect the placenta and the cord for stem cell collection (and of course the baby's and mother's DNA).

    I think this is a loosing battle. It's so easy to collect DNA anyway. It's not really hard to tell where all this is leading. Just by sampling yesterday's news you can imagine (without being too imaginative) that one day a corporation is going to be a president of USA or the new Earth government, and each one of the inhabitants is going to be matrix like "cells" serving the corporation. If we don't destroy the Earth first, that is.

  • by dafz1 (604262) on Friday February 05, 2010 @08:44AM (#31033824)

    My wife does molecular and cytogenetic testing. This was her reaction:

    "Over reaction. Yes the state labs keep blood spots...I don't know when anyone would ever want to go back and get a sample with someone's name on it unless they were working on a gene that is on the newborn screening panel. They legally can not use genetic testing to prevent you from getting a job or insurance..and who would. It would take more time and money than it's worth to get that information from a newborn screening card. Everyone is told about newborn screening and everyone has the opportunity to decline. It's a matter of whether you are actually paying attention to what is happening with your child. If you don't understand you have a responsibility to speak up. Newborn screening is important...research on deidentified samples is important. No one is out to get you. No one has the time or energy to get you. Life is not CSI."

    • by Rogerborg (306625) on Friday February 05, 2010 @09:15AM (#31034078) Homepage

      They legally can not currently use genetic testing to prevent you from getting a job or insurance

      Fixed that for you. It's really just a question of how much lobbyists will have to pay to be allowed to do end runs around GINA. For a baby born now, they've got 70+ years to manage it.

      • Those issues don't scare me. I've been self employed and have skills that can't be taken away from me. If I need medical care I can pay cash if need be. What scares me is the idea of the government arresting me without cause because my DNA sample was found at the scene of some crime.
      • by Rich0 (548339) on Friday February 05, 2010 @01:11PM (#31036990) Homepage

        Plus, this ignores the other side of the case - if you KNOW your kid will never get cystic fibrosis, why pay for insurance that covers that disease? If you KNOW your kid will be diabetic (most likely), why not go ahead and buy the super-deluxe no-copay/no-limit health plan?

        Insurance only works in the absence of knowledge by BOTH parties. Genetic testing makes true insurance impossible.

        Now you can still have socialized medicine, and many people call it "insurance" but that really isn't what it is. A kid born with a bad heart valve or whatever doesn't need insurance - they need health care. In the US, for a number of reasons, the one has become synonymous with the other. What most people think of as "insurance" is just a discount buying plan so that you're not taken advantage of by price-gouging hospitals and doctors/etc.

        Note, this isn't intended as a criticism of either private insurance or socialized medicine. The problem we as a society has it that most people don't really appreciate what both of these things really are, and what their inherent pros/cons are. The fact that people with a profit motive (from insurers to vendors to doctors to everybody else) bribe politicians left and right doesn't help to clarify things either.

    • My son was born with a thyroid problem, without the required state testing he probably wouldn't have been diagnosed until after he started having developmental issues. Because of the screening he was immediately put on Synthroid and leads a normal healthy life.

      Other than using the DNA to later in life convict him of a crime, I have no other problems with any entity having access to DNA. The only thing that scares me is being put in jail for petty crimes because you're linked to a crime by your DNA. As
      • by smashr (307484)

        My son was born with a thyroid problem, without the required state testing he probably wouldn't have been diagnosed until after he started having developmental issues. Because of the screening he was immediately put on Synthroid and leads a normal healthy life.

        Let's be clear: Genetic testing is not the problem here -- on the contrary, I am sure there are many positive examples like yours where genetic testing has helped people. It's even okay for the government to mandate testing -- yes, there is a compelling public health interest.

        The problem arises with the disclosure of the substance (dna itself) and results of this testing. The government has no claim to either beyond basic statistics of 'X cases of Y in Z area'. As a soon-to-be parent, I am outraged that the

    • by SecurityGuy (217807) on Friday February 05, 2010 @09:37AM (#31034272)

      Oh, thank $DIETY, as long as it's not legal, we're fine. Can we talk about illegal wiretaps by the government en masse in recent years with the cooperation of major telecoms, where nobody will ever be prosecuted?

      Your wife's right, nobody's going to go back to a paper card for information. They're going to go to a database where getting this information is easy and inexpensive. Just look to jurisdictions that do or want to take DNA if you're convicted or accused of a crime, or in some cases arrested. If this information isn't in a database now, it will be when someone comes up with a perfectly reasonable and innocuous reason to do it. The abuse of the data comes later. The medical field is great at this, sadly. It makes me angry when I get forms, like I did for umbilical cord blood donation, that talk about how it can save lives of my child or others if they have some condition or other.. ...oh, and we can use it for research if we want. ...oh, and we can also use it for anything else we want, without limitation.

      What? No. Stop being ridiculously unreasonable and overreaching. Ok, testing for certain genetic diseases is a good idea. You may proceed. You may not keep the samples. You may not do anything with the information that doesn't directly benefit my child's health without my consent.

    • by Anonymous Coward

      You, and your lovely wife are both missing the point.

      It isn't about what the law says is legal, or even about what people are doing with the data right now.

      It takes a long time to build this sort of database, and create the mechanism by which outside agencies can access the data, but it is relatively quick to put the legislation in place (if you wait for the right moment). Once the system is there, the legislative changes will follow at some point.

      If you make it easy for an organisation to do something, the

    • http://xkcd.com/683/ [xkcd.com]

      I liked this one, totally reminded me of any CSI or any TV really with any mention of technology and/or science in it.

  • No worries. (Score:5, Funny)

    by Thanshin (1188877) on Friday February 05, 2010 @08:46AM (#31033832)

    The solution is obvious; we just need ways of permanently change our DNA.

    If irradiated spiders aren't enough, we can bring back the nuclear testing.

    This has the added positive effect of fighting crime.

  • by mediis (952323) on Friday February 05, 2010 @08:46AM (#31033836)
    Don't you remember the 80's and 90's when there was the big push to get your children's registered -- just in case they were abducted. What do you think happened to THOSE databases.
  • yet another reason not to have the rest of my children in a hospital. one was enough... no more.

    • yet another reason not to have the rest of my children in a hospital.

      In that case you should look into unassisted childbirth [unassistedchildbirth.com]. Apparently everything you know about childbirth is wrong and these people have the pictures and videos to prove it.

      If you want the job done right...
      do it yourself!

      • by darjen (879890)

        for our second kid who is due soon, we have a midwife at a birth center that's about a half hour away from our house. the hospital was simply not a very pleasant experience. our first doctor elected to give my wife surgery to cut the placenta because it wasn't coming out fast enough. turns out the doctor was in a hurry because she had to catch a plane for vacation.

    • by mcgrew (92797) *

      Pray there are no mdeical complications. Before they started having children in hospitals, childbirth was the #1 killer. Back in those days, men had longer life expectancies than women just because of that.

  • See, I wouldn't have a problem with this sort of thing if the government wasn't already so shady. But with the way things are...

  • Parents SHOULD get their babies tested for major genetic illnesses, they SHOULD get their kids fingerprinted and footprinted, and they SHOULD have current dental x-rays and photographs available.

    But the parents should be the only ones who have long-term copies of this data.

    By the way, many public school systems keep photographs of children long-term - your kid's high school probably has his kindergarten photo in the kid's "permanent record." Schools usually destroy "permanent records" several years after g

  • Insurance (Score:4, Insightful)

    by Orgasmatron (8103) on Friday February 05, 2010 @08:55AM (#31033908)

    You also can't get fire insurance after your house burns down.

    If you already have an expensive condition, the concept of insurance no longer applies to you. It is no longer possible to pool your risk. At that point, you are looking for a SUBSIDY.

    Insurance is only possible when you have a large pool of people looking to mitigate the risk of a low probability but high downside event. Mathematically, fire insurance is a terrible purchase. The cost of premiums times the chance of having a claim is WAY higher than the expected payout. But you buy it because the downside is huge and you don't know if you are going to be on the unlucky side or not.

    • Re: (Score:2, Interesting)

      by Anonymous Coward

      That is a great point. And that's exactly why "health insurance" as a primary means of paying for health care doesn't make any sense. After all, things like annual check-ups, blood tests, etc - are not "low probability high downside events." Certainly events like pregnancy and birth are not. Clarifying this distinction really helps to see the inherent sensibility of single-payer. We expect that everyone will need health care, though not everyone will be in a car accident or have their house burn down - so t

      • Re: (Score:3, Interesting)

        by anegg (1390659)

        Bingo. You hit the nail on the head. There needs to be a distinction between "health insurance" and "health care." There need to be further distinctions between ordinary maintenance-level "health care" (annual check-ups, birth control pills, ordinary sicknesses that are treated with one or two doctor visits), extra-ordinary "health care" (significant devastating acute care problems like broken bones, hospitalizations for serious infections, treatable cancers), and extreme "health care" (untreatable/diffi

    • by alen (225700)

      if you get insurance from your employer than they will cover existing conditions

    • Re: (Score:2, Insightful)

      by lucian1900 (1698922)
      Which is why the concept of health insurance is wrong. The able should pay for the needing. That's how civilised society works and that's how health care works in many European countries.
  • by mbone (558574) on Friday February 05, 2010 @08:59AM (#31033936)

    We used Census records (supposedly secret for a century) to help find Japanese to intern in World War II.

    In the same war the Germans, of course, respected no privacy constraints at all, and used any information they could get for all sorts of much more nefarious projects.

    I am old enough to remember that, not only were blacks segregated in the South, but that blood tests would be run to determine just who was and wasn't black, in borderline cases. If DNA testing had been available, I have no doubt it would have been used.

    So it seems pretty clear that DNA information, if kept indefinitely in an identifiable fashion, will eventually be used maliciously. A long and lamentable history shows that we can count on that. The question is, are we going to act on this knowledge, or do nothing about it, and continue to let things slide into what could be a very nasty future.

    • by MadCow42 (243108)

      >>if kept indefinitely in an identifiable fashion, will eventually be used maliciously

      Add to that the potential for misappropriation along the way. Data gets stolen, and sold.

      I was horrified on a trip to Disney World 2 weeks ago when I saw they had fingerprint scanners on every turnstyle (in addition to your pass card). Supposedly this is to ensure only one person uses the card, and you can't hand it off to someone else. The good news is that they don't ask it from kids, and when I refused they sim

      • by thijsh (910751)
        Think about this factor: if they keep record of the DNA and fingerprints of almost everyone, the usefulness will go down... If everyone is registered theoretically you would have no crime, since the detection should be 100%. But we all know that won't happen, crime will continue and smart people will find new ways to circumvent the fingerprint or DNA detection... I even read an article recently that DNA can be faked now (the tested markers), so you can impersonate any unlucky fuck. If you can prove that doz
  • I don't think that the real issue is privacy. After all, DNA is so easy to obtain that if someone is determined to do it, it's a simple task. No, I think the real issue is the cost of collecting, storing and analyzing this mountain of data. Exactly what are the benefits supposed to be, versus the costs involved? Do we really want to pay for all of this? Is it going to maintain roads, or prevent crime?

    Of course there's the possibility of charging for access to this database, as researchers would have a bona-

    • by pmontra (738736)

      I don't think that the real issue is privacy. After all, DNA is so easy to obtain that if someone is determined to do it, it's a simple task.

      What's difficult is obtaining the DNA of millions of adults and associating each sample with the name of the person it comes from. So it's an issue of privacy when you can do that on such a large scale by sampling babies. You build a database and if in the future we get the technology to sequence all those DNA cheaply we'll get a searchable db of everybody in the US. That's probably a valuable asset so my concerns about privacy are big.

  • Recent Experience (Score:2, Informative)

    by WorkingDead (1393377)
    My wife and I recently had a baby in Texas and found out about this. The blood sample is taken by pricking the babies heel 24 hours after birth and placing five drops of blood on a five panel card. The state of Texas requires that the samples be sent to a state lab and screened for congenital adrenal hyperplasia, congenital hypothyroidism, galactosemia, phenylketonuria, sickle-beta thalassemia, sickle-cell anemia, and sickle-hemoglobin C disease (http://www.dshs.state.tx.us/LAB/nbs_article.shtm). Luckily
    • Luckily they give you a form you can fill out when you leave the hospital to request the state to destroy the sample after their screening.

      This does not inspire me with confidence.

  • Openness is the only way to go. Instead of deception and hiding our DNA why not go out into the world with the truth displayed for all to see? Some folks will be inferior in their composition but if that is the way that God made them why should they feel shame? It is time for people to forget these primitive notions about privacy.

  • I recently had my first baby, who came out a little premature. I was disgusted by the sheer volume of blood testing performed. The NICU staff did the normal, government-mandated tests, then they did regular blood testing every week to monitor her anemia. Somehow the NICU staff was "mystified" as to why my daughter's anemia was getting worse. I'm not a doctor. I am an engineer on a campus with medical journal access. With a simple model based on her estimated blood volume and the volume they removed for all
    • Re: (Score:3, Insightful)

      by Wonko the Sane (25252) *

      Had they just left my daughter alone, I think she would have had the typical levels of Hematicrit and Hemoglobin.

      Leave her alone? If they did that how would they generate the fees necessary to pay off their student loans? Where are your priorities?

    • by Duradin (1261418)
      It is interesting how it seems that these days every baby pops out with a medical degree for the mother.
  • Damn it, some hospital staff even posted a rotating picture of my own personal DNA on Wikipedia. What can I do about this ? Can I force them to remove it ?

    http://en.wikipedia.org/wiki/File:ADN_animation.gif [wikipedia.org]

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