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Comments: 268 + - Science: Routine DNA Tests For Newborns Mean Looming Privacy Problems on Friday February 05 2010, @09:13AM
Posted
by
timothy
on Friday February 05 2010, @09:13AM
from the let's-just-size-you-for-your-uniform dept.
from the let's-just-size-you-for-your-uniform dept.
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medicine
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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CSI (Score:2)
Re:CSI (Score:5, Funny)
Not right now. They're still taking...
*sunglasses*
Baby steps.
Parent
Re:CSI (Score:5, Funny)
('cause you forgot the real punchline. This public service announcement added to sneak past the lameness filter.).
Parent
Re: (Score:3, Insightful)
Surely that depends on the crime?
GATTACA (Score:5, Interesting)
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)
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.
Parent
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?
Parent
Re: (Score:3, Interesting)
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
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
Parent
Re: (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 wor
Re: (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 lo
Re:GATTACA (Score:5, Interesting)
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.
Parent
Re: (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
Re:GATTACA (Score:4, Informative)
Parent
Re: (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
Re: (Score:2, Funny)
Re: (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
Uninsurable (Score:5, Interesting)
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.
Re: (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
Re:Uninsurable (Score:4, Interesting)
It must be awful to not understand what insurance is. All insurance (Auto, Life, Fire, Health, etc) works by the majority subsidizing the minority. The majority pays much more in premiums than they receive in benefits due to the fear of the small chance they will require care that is very expensive. The chances of you using as much coverage as you pay in premiums has to be small or insurance would not work. It is not a charity.
First: That pool of money has to equal the total premiums or taxes paid, right? The pool doesn't receive charitable donations and money doesn't just magically appear.
Second: The total benefits paid out can't be larger than the pool or else insurance would operate at a loss, which other than the government apparently, is unsustainable.
Third: The math doesn't lie. Some people will pay much more in premiums than they receive in benefits and some people will pay much less in premiums than they receive in benefits. Insurance operates on the fear that you will be unlucky and be one of the people who requires expensive treatment. The majority would be better off putting their money in a savings account. I am 25 years old and have paid for my own insurance for 7 years. It cost me (including what my employer contributes) about 5 grand a year. With no interest I would have $35,000 right now minus 7 routine check ups @ a couple hundred dollars each cash. If I invested that $5000 a year in a savings account that earns 2% interest starting now, when I am 50 I will have $172,009. I am basically gambling that I will require over $172,000 worth of medical care by the time I am 50. Even though the chances of that being the case are very small.
Parent
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.
Parent
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."
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.
Parent
Re: (Score:3, Interesting)
"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
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.)
Parent
Re: (Score:3, Interesting)
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
Re: (Score:3, Interesting)
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
names egregious, but not relevant (Score:5, Insightful)
Re:names egregious, but not relevant (Score:4, Informative)
While the parent is correct that 24 SNPs is sufficient in a given population, in practice it's probably hard to choose 24 SNPs that cover ALL populations in the world well (since a SNP with a high minor allele frequency in, say, Europeans, may not have a high minor allele frequency in Asians, or Indians, or Australians...
Parent
HIPAA (Score:5, Interesting)
Opt out (Score:2)
At least one state, Texas, allows parents to opt out of the screenings.
In Canada (Score:3, Interesting)
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.
From someone who does Genetic Testing (Score:5, Interesting)
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."
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.
Parent
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.
Parent
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.
Parent
No worries. (Score:5, Funny)
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.
We've been doing this for years! (Score:3, Interesting)
Re: (Score:3, Funny)
avoiding hospitals from now on (Score:2)
yet another reason not to have the rest of my children in a hospital. one was enough... no more.
Ehhh... (Score:2)
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...
Baby DNA should be like baby fingerprints (Score:2, Informative)
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)
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:3, Interesting)
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
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.
Personally (Score:2)
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-
Re: (Score:2)
I really don't know what the problems of human cloning in the future will come from. Maybe someone will make a few billion slave laborers or really rich people will come up with an exclusive sort of immortality that requires a lot of clones to maintain. But spending a lot of money
Re: (Score:2)
Re: (Score:3, Funny)
Hmmm that sounds like pedo reasoning to me. Maybe we should dig up this guy's cellar.
Re: (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?