Routine DNA Tests For Newborns Mean Looming Privacy Problems 268
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."
The important part of the article (Score:5, Insightful)
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."
names egregious, but not relevant (Score:5, Insightful)
Re:The important part of the article (Score:4, Insightful)
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:GATTACA (Score:5, Insightful)
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?
Insurance (Score:4, Insightful)
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.
The day will come when this is used maliciously (Score:5, Insightful)
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.
Re:From someone who does Genetic Testing (Score:5, Insightful)
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.
Re:From someone who does Genetic Testing (Score:1, Insightful)
They legally can not use genetic testing to prevent you from getting a job or insurance
Yet.
Re:GATTACA (Score:3, Insightful)
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
Re:From someone who does Genetic Testing (Score:5, Insightful)
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.
Re:Insurance (Score:2, Insightful)
Re:CSI (Score:3, Insightful)
Surely that depends on the crime?
Re:No worries. (Score:1, Insightful)
I mean shit, they're already worried about this popping up in this year's Olympics. [wired.com]
Re:Anemia due to diagnostic testing (Score:3, Insightful)
Leave her alone? If they did that how would they generate the fees necessary to pay off their student loans? Where are your priorities?
Re:The important part of the article (Score:4, Insightful)
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].)
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.
Sorry, you lost me here. Are you suggesting that Rahm Emanuel has been advocating some sort of forced eugenics program? Link, please?
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.
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.)
Re:Uninsurable (Score:2, Insightful)
Government also is not a money tree. This is why socialist health care has always failed.
Citation needed.
You either have to deny care to certain people or ration it.
Again citation needed, I don't see droves of people denied care in Europe.
There is no such thing as infinite free anything, including health care.
Health issues are not infinite either, they are quite measurable.
If you want someone to do WORK for you to help you live longer then you have to trade an equivalent amount of WORK in exchange.
Have you ever heard of Insurance or, gasp!, Taxes ?
You know, there is a reason you pay an insurance premium or taxes (for public medical insurance which is another name for Healthcare).
It's to get a pool of money so that you can provide services to all without having every single person to pay in full. If you have to pay in full for service then insurance is useless.
Stop being lazy and entitled and do what you need to do to make enough money to take care of yourself. If not then when nature says you're time here is done then it's done.
You have my sympathies, must be awful to live with complete lack of care for others.
Re:Uninsurable (Score:3, Insightful)
In the 1st world, it's rare for someone to out and out DIE of hunger, yet there are plenty of people who can't afford food. Health-care should be the same way, no one should die because they don't get preventative treatment.
I'm not necessarily arguing for heroic measures should my heart lung and spleen all fail at once, but dammit, someone should need their foot amputated and dead kidneys because they were too poor to afford their insulin. (does diabetes kill kidneys? I have no idea).
Re:GATTACA (Score:4, Insightful)
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:GATTACA (Score:3, Insightful)
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 cancer, diabetes or one of the thousands of chronic (and in the US, expensive) diseases that grace our textbooks^HPDAs.
In the magical world of no preexisting conditions, you go 'uh oh' and sign up. After 50 years of not paying anything at all. Really hard to find a business case that works here.... Personally, I'm all for an opt-out clause (say, after age 18) when you can avoid paying into the system but you also avoid getting any care. The reality is that's marginally ethical (you would have to ensure that everyone opting out understood what they were doing - an impossible task). So everyone has to get treated (at least at some level), who are you going to bill?
Quick check, yep, closed all of the parenthesis.
Re:GATTACA (Score:3, Insightful)
But it everyone pays a little, then the cost for everyone goes down, even if it means that "you pay for your neighbour".
It's one of the reasons that countries with universal healthcare systems pay *considerably* less of their GDP on healthcare compared to the USA.
The US system is excellent once you are past all the insurance nonsense, but it doesn't have to be like that. If everyone paid national insurance (akin to the UK method), then you would pay *much* less than you are paying for health insurance right now, there would be *no* insurance malarkey bullshit about a broken arm being a pre-existing condition, or "this doctor sis out of network" etc, all of your citizens would be covered, and you would still have the excellent facilities that you do right now.
There just has to be a little leap that if everyone chips in, it is better for everyone. I have heard the argument "why should I pay for my neighbour?" from several Americans regarding healthcare, and the answer is simply, because it benefits *you* if everyone who works a job is paying a small amount. Even if you don't care about Joe-Schmoe down the street who "burdens" the system by smoking 20 a day and eating nothing but McD's - ignore him: your healthcare is cheaper, and he gets looked after. You are also not tied to your job, and still covered for treatment if you lose your job while you look for another one.
The US could easily afford to run the system that way; with the amount it is shelling out currently, it could easily do it - so much money is just wasted (read: going into the pockets of insurance companies and never seen again).
If you meet three strangers in a shop and you all want to buy a slice of cake, but the store only sells them whole, it is better for you all if you pool your money and buy one between you. The more of you there are, the cheaper it is. As a bonus, after you have all taken the piece that you want, the last slice left over can be given to the guy outside who lost his job and has no money for cake right now.
The government has a part to play in society - I agree that some of the powers it is foisting on the population (I live in the UK, where surveillance is getting very heavy now) are not great, but in my opinion, having extensive personal experience with both the US and UK healthcare systems, it is one thing that you really *do* want the government to handle.
(Note that in the UK you can go private if you like, paying insurance etc - they have their own hospitals, insurance companies, separate lines etc, so you can go down that route if you like, but the NHS is always there for you when you need it).
Re:GATTACA (Score:3, Insightful)
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 works from other countries that have done it already.
Re:Uninsurable (Score:4, Insightful)
1)Good luck finding a savings account that actually pays out 2% interest (yes I know there are a few, but they keep dropping rates as long as the fed stays at 0-0.25%. Mine has dropped from 3% to 1.2% in the last 18 months). CDs aren't much better unless you're willing to lock it up for a long time. 401k is the best, but the money is not then available if you do need it for medical expenses.
2)You'd be amazed at how quickly you can rack up $172,000 in medical expenses and the chances are probably higher than you think. Cost per day in a hospital is anywhere from $1000-$3500, depending on level of care. If you get in an auto-accident or have some other condition requiring emergency surgery, that's very expensive. Plus, if you're uninsured, you get charged more or you may be denied non-emergent care unless you can prove the ability to self-pay. Chemo treatments can easily be $5000 per treatment or more, and a typical course would be 6 weeks of treatment 3 times a week.
Also take into account any lost wages due to a serious injury or medical condition leading to hospitalization and possibly long recovery.
3)You also need to take into account costs of what would happen if you had a large medical expense now, not covered by insurance. The interest rate on any debts accrued because of it would most certainly be greater than the 2% you would gain in a savings account.
Re:From someone who does Genetic Testing (Score:5, Insightful)
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.
Re:GATTACA (Score:3, Insightful)
The big difference between American and the rest of the first world is twofold actually. First, that american corporations and industries have an unprecedented amount of influence over government policy. Second, that in general, american corporations care more about return to shareholders than anything else, including the treatment of their employees and corporate citizenship. The only time the latter two get any funding is usually for PR reasons, not altruism.
Don't believe me? Americans tend to work longer hours, get less vacation time, maternity/paternity leave, worse working conditions, and as a consequence, have higher stress levels than any other first world nation. Why? Because most corporations will only do what the government REQUIRES them to do, and given the corporations sway over the government here, it is less and less likely that initiatives to improve working conditions would ever be made law, because it would hurt the bottom lines of companies (which would mean less lobbying dollars going to Washington!)
How does this affect health care? Well, most people in positions to make any difference to policy (either politicians, or the corporations backing them) can already afford health care. They really don't care about those who can't afford it. The only reason it is actually gaining traction now is because finally there are people in enough key positions (like the presidency) who don't just care about themselves and their financial backers to actually try and get something that benefits ALL Americans passed into the law - even if it means taking on a very powerful lobbying group (the insurance companies).
America may have many proud traditions. Hell, it was probably founded on the best and most LIBERAL ideals (for the time) ever attempted at governmental level since the Romans (pre-emperor). But those ideals and principles have been slowly eroded with the rise of corporate power, and America just isn't the shining beacon of a government 'for the people' that it once was. So why not look at how other countries who ARE looking after their people for inspiration? To ignore good ideas because they are foreign is both arrogant and just plain stupid.