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Routine DNA Tests For Newborns Mean Looming Privacy Problems

timothy posted more than 4 years ago | from the let's-just-size-you-for-your-uniform dept.

Privacy 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."

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CSI (1)

coinreturn (617535) | more than 4 years ago | (#31033636)

No chance this will be used to solve crimes CSI-style, right?

Re:CSI (5, Funny)

Sockatume (732728) | more than 4 years ago | (#31033654)

Not right now. They're still taking...

*sunglasses*

Baby steps.

Re:CSI (4, Funny)

bsDaemon (87307) | more than 4 years ago | (#31033700)

YEEEEEEEEEAAAAAAAAAAAAAAAAAHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!

('cause you forgot the real punchline. This public service announcement added to sneak past the lameness filter.).

Re:CSI (0)

Anonymous Coward | more than 4 years ago | (#31034274)

No chance this will be used to solve crimes CSI-style, right?

Haven't you seen Super Bad. Crime scenes are not covered in semen, sorry.

Re:CSI (2, Insightful)

iapetus (24050) | more than 4 years ago | (#31034304)

Crime scenes are not covered in semen, sorry.

Surely that depends on the crime?

frst pst (-1, Offtopic)

Anonymous Coward | more than 4 years ago | (#31033638)

first post!

Re:frst pst (1)

MokuMokuRyoushi (1701196) | more than 4 years ago | (#31034232)

Failure.

GATTACA (4, Interesting)

quantumphaze (1245466) | more than 4 years ago | (#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 (4, Informative)

MRe_nl (306212) | more than 4 years ago | (#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 (5, Insightful)

Anonymous Coward | more than 4 years ago | (#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?

Re:GATTACA (1)

TheLink (130905) | more than 4 years ago | (#31034226)

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:GATTACA (2, Interesting)

timeOday (582209) | more than 4 years ago | (#31034630)

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 a tax) is a good thing. Otherwise too many people fail to make provisions for the inevitable, and then fall back on the rest of us.

Re:GATTACA (1)

Fred_A (10934) | more than 4 years ago | (#31034516)

Their logo even has "GATTACA" in it.

Wow, that's so reassuring...

Re:GATTACA (2, Funny)

Luke Wilson (1626541) | more than 4 years ago | (#31033828)

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:GATTACA (2, Insightful)

alen (225700) | more than 4 years ago | (#31034108)

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:GATTACA (0)

Anonymous Coward | more than 4 years ago | (#31034540)

Too bad that is not true. If you don't have money, you do die.

http://www.cnn.com/2009/HEALTH/02/27/healthcare.budget/index.html

But who wants to pay for your neighbor's genetic or other diseases? Fuck them! At leas that's the spirit of the Americans based on the latest polls. I say pull Medicare and Medicaid too. They cost too much and people that are old should get their own insurance. At least they will be free from the tyrannical government and their death panels. Right?

The reality is that it goes like this,

  1. you are healthy, you get insurance from your employer
  2. you get sick, the employer fires you over something to get rid of a worker that can't work
  3. you lose insurance
  4. you are fsked

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

People don't get it. Health care is not a money maker, it's a money loser. There is no wealth generated. It is only a money sink hole for people that are sick. And we will ALL get sick and ALL die. And in the end, we all lose.

Re:GATTACA (0)

Anonymous Coward | more than 4 years ago | (#31034160)

Funniest part about the whole "eugenics" and Survival Of The Fittest things are there is one huge flaw in that limiting only some of the genome to thrive is the worst possible thing, genetically.
More diversity leads to less chance of a superbugs.

But one wonders what is going to happen, say, 10 generations down the line.
High sugar diets, high fat diets, high pretty much everything diets, including some (currently) useless minerals, obesity, etc.
And the high stress lives, 24/7 societies, education separation.
I'm pretty sure something highly noticeable will happen in that time frame, whether it is a increase in intelligence, better fat / sugar management, energy levels, lifetime (this will certainly go up), further incompatibility between certain groups (speciation).

Re:GATTACA (0)

Anonymous Coward | more than 4 years ago | (#31034606)

Hitler would be proud. Aktion T4 [wikipedia.org]

Some land of the free, huh?

They say it's not a big deal. BULLSHIT. (0)

Anonymous Coward | more than 4 years ago | (#31033648)

There are a lot of pundits who say it's not a big deal. Frankly, I'm not so sure. There's no doubt, we will have human cloning technology within the next 25 years. It will probably be developed in China or India or Brazil, where their technological abilities are rising, but human rights are a much, much lower priority than they are even in America.

Such technology, even if developed in the third-world, will come to America. The DNA information and samples stored here will be used to clone new individuals, or at least genetically modify existing ones. We'll see people tried and convicted for crimes a clone had committed, based on DNA "evidence". It will happen.

Re:They say it's not a big deal. BULLSHIT. (1)

khallow (566160) | more than 4 years ago | (#31033856)

Sure that's a problem, but not a serious one. After all, if I had some power and I wanted to frame you, then all I have to do is find some child porn on your computer. No need to spend a lot more money to grow a clone criminal.

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 to frame people with clones is not going to be high on that list.

Re:They say it's not a big deal. BULLSHIT. (1)

JosKarith (757063) | more than 4 years ago | (#31033894)

Actually, I can see this being used to clear someone on the basis that a clone might have done it first. Defence lawyers tend to be better pai^H^H^H motivated so will try this at the first instance that it might actually work.

Uninsurable (5, Interesting)

eldavojohn (898314) | more than 4 years ago | (#31033666)

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.

Re:Uninsurable (0)

Anonymous Coward | more than 4 years ago | (#31033802)

With french health care... you always find an insurance.
Yeah it costs a lot, but whatever your DNA, you are insured.

A.F.C.

Re:Uninsurable (1)

maxume (22995) | more than 4 years ago | (#31033944)

Just imagine though, once an insurance company starts billing people for having certain genes, their competitors can advertise "We bill you based on the probability that you will need care in the future and the costs of that care, not by arbitrarily punishing you for having certain genes!"

I don't really have a problem with society working to offset the consequences of the genetic lottery, but it is just silly to call something insurance when it is purchased after the flood.

Re:Uninsurable (0)

Anonymous Coward | more than 4 years ago | (#31034122)

Here's the quandary. Should people with genetic diseases reproduce? If their habits are personally financed, might that change their decisions? Sorry to say, it's hard to be Utopian about it but I certainly can see the country going apesh** crazy and deciding to purge all uncooperative minorities so that a certain problematic, ethnic group/class can go on fantasizing about being "cat people". Oh, yes I can.

Re:Uninsurable (0)

Anonymous Coward | more than 4 years ago | (#31034198)

It's sad how many people completely fail to understand what insurance is and how it works.

Insurance companies are not money trees. If they don't bring in more money from their customers than gets paid out then they cease to exist and you have no insurance.

Government also is not a money tree. This is why socialist health care has always failed. You either have to deny care to certain people or ration it. There is no such thing as infinite free anything, including health care.

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.

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.

Re:Uninsurable (1)

Wonko the Sane (25252) | more than 4 years ago | (#31034418)

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.

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.

But reality is so cruel and heartless! We should pass a law...

Re:Uninsurable (2, Insightful)

Anonymous Coward | more than 4 years ago | (#31034634)

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 (1)

kj_kabaje (1241696) | more than 4 years ago | (#31034712)

Too bad you posted AC. I'm afraid you'll need to cite your evidence that socialized medicine doesn't work. Please don't cite from FOX or Murdock's NewsCorp empire either. The WHO ranks France and Spain well ahead of the United States in healthcare and most of western Europe as well. It would appear that societies that choose to care about their people are indeed making it work without breaking the bank. It's not about being a money tree, it's about investing in and caring for your population.

Re:Uninsurable (1)

elfprince13 (1521333) | more than 4 years ago | (#31034714)

Obligatory "here comes Gattaca"

The important part of the article (4, Insightful)

thomasdz (178114) | more than 4 years ago | (#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."

Re:The important part of the article (4, Insightful)

Anonymous Coward | more than 4 years ago | (#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:The important part of the article (3, Interesting)

sjs132 (631745) | more than 4 years ago | (#31034032)

"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 the "lives" program were
implemented as suggested by Rahm Emanuel then I would not have two wonderful children. Did they have downs? Nope, just similar
gene issues, but mentally they are higher than their peers.

Now granted, the PDF references the DBS (Dried Blood Spot) test, but the in womb testing was also pushed by the gyny before the
children were born along with "Counseling"... Pretty "standard" test from talking to other parents. You have the option to
opt-out, but one could easily see that option being eliminated if the "cost" could be justified by the long term health care savings
of the terminated "unfit" pregnancies.

Even our current president stated:

I've got two daughters. 9 years old and 6 years old. I am going to teach them first of all about values and morals.
But if they make a mistake, I don't want them punished with a baby.

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

I guess I'll get off my soapbox now...

Re:The important part of the article (1)

Peter La Casse (3992) | more than 4 years ago | (#31034498)

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.

Re:The important part of the article (4, Insightful)

Mr. Slippery (47854) | more than 4 years ago | (#31034580)

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.)

I trust my insurance company more than my gvmnt (0)

Anonymous Coward | more than 4 years ago | (#31034724)

It has been proven over and over again, you can't trust the government with personal data. It will get out if not on purpose, by accident. The only way prevent this data from being released? Don't let them have it. Make it illegal.

At least with my insurance company, I know they are being driven by profit.

Don't get me wrong, I don't want either having genetic data if it can be used against anyone.

If the data is truly anonymized, I guess making it publicly available for everyone in the world would be fine, but only if **every** congressman, senator and president's data is also included in that release.

What's next? (0)

Anonymous Coward | more than 4 years ago | (#31033670)

Soon they will just start pre-emptively injecting RFIDs into all newborn babies and claim that its just so they don't get handed to the wrong parents. Or stolen by paedophiles, anyone who opposes a measure that is designed to make life harder for paedophiles can just be dismissed as a paedophile themselves.

Basically we just need to try and convince the government that a reduction in privacy benefits paedophiles.

Re:What's next? (2, Funny)

lxs (131946) | more than 4 years ago | (#31033920)

Hmmm that sounds like pedo reasoning to me. Maybe we should dig up this guy's cellar.

names egregious, but not relevant (5, Insightful)

neurogeneticist (1631367) | more than 4 years ago | (#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.

Re:names egregious, but not relevant (0)

Anonymous Coward | more than 4 years ago | (#31033902)

Just curious, but could you elaborate on what "well-selected" means?

Re:names egregious, but not relevant (2, Informative)

neurogeneticist (1631367) | more than 4 years ago | (#31034166)

If you just pick 24 random SNPs, they may not be particularly informative for your population (i.e. they may be monomorphic or have very low minor allele frequencies that don't help you discriminate individuals). So you want to pick markers that are bi or even tri-allelic with high MAFs for your population, to make sure they vary enough from person to person to tell them apart.

HIPAA (5, Interesting)

Anonymous Coward | more than 4 years ago | (#31033726)

At a minimum, HIPAA should apply http://www.hhs.gov/ocr/privacy/ [hhs.gov]

Opt out (1)

Wonko the Sane (25252) | more than 4 years ago | (#31033768)

At least one state, Texas, allows parents to opt out of the screenings.

Re:Opt out (1)

No Grand Plan (975972) | more than 4 years ago | (#31033892)

I was just going to celebrate the fact that for once South Carolina, being one such state, is not behind the rest of the country!

Full disclosure: I live in South Carolina.

Not a problem at all (0)

Anonymous Coward | more than 4 years ago | (#31033788)

Didn't you get the memo ? Using DNA is only bad for privacy when a man use it to disprove paternity. Any other use of DNA info is perfectly fine.

Devil's Advocate (0)

Anonymous Coward | more than 4 years ago | (#31033790)

So I'm not really for the keeping of names attached to the genetic material. BUT I have to agree with the researchers that this is an invaluable dataset for genetic research which by all accounts is the future of many medical breakthroughs. So, assuming the genetic material has the names removed and has the geographical information limited to what county it is from (though in some counties in my home state of OK that might still be too specific) then I don't see a problem with this particular part of the story.

Let me be clear though, I don't think genetic material attached to a child's record should be stored by the state for any real (>1 yr) length of time. I do support the idea that all children are tested for genetic diseases at birth. I would amend the law to notify the parents that it happens though and notify them of their rights regarding the genetic material.

Gattaca (1)

Andypcguy (1052300) | more than 4 years ago | (#31033800)

Welcome to GATTACA! It's both scarry and inspiring at the same time.

In Canada (2, Interesting)

mario_grgic (515333) | more than 4 years ago | (#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.

From someone who does Genetic Testing (5, Interesting)

dafz1 (604262) | more than 4 years ago | (#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."

Re:From someone who does Genetic Testing (0)

Anonymous Coward | more than 4 years ago | (#31033860)

We'll see how everyone feels when google get to maintain the database.

Re:From someone who does Genetic Testing (0, Troll)

Ada_Rules (260218) | more than 4 years ago | (#31033916)

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."

Oh well then. That is settled. Nothing to worry about. Cool. By the way, I have setup cameras outside your bedroom window and have been taping the sex acts you and your wife have been involved in. Since there are laws that outlaw rape, murder, etc nobody that I distribute this to will getdo anything to her...and who would.. No one is out to get you. Life is not CSI.

Re:From someone who does Genetic Testing (0)

Anonymous Coward | more than 4 years ago | (#31033984)

Logically impossible, sir. No one has sex with their wife!

Re:From someone who does Genetic Testing (0)

Anonymous Coward | more than 4 years ago | (#31034050)

Keep living in your happy little world where the government always says the truth, and doesn't hide things for personal interests and the like. A world where companies have actual security, and where life can be patented. Me, well I will keep living in mine where I know it is up to me to do more for myself. My own food tests (FDA lies), my own electricity, communication network, etc.. I'm sorry but my baby's DNA is their property and until they are of legal consent my responsibility to maintain that ownership. There is no way to insure to me that those samples over the years haven't been used just for disease screening, and sorry I don't buy into the whole it is for your own good reasoning. There are people in this world out to get you maybe not specifically but in general. Most are impotent little boys masquerading as men because they have to control others since they have come to the realization that they themselves need vast amounts of improvement and aren't actually fit to be leaders unless they do so. Lord, how I miss the days of challenging one to a duel. Maybe I will die one day.

Re:From someone who does Genetic Testing (4, Insightful)

Rogerborg (306625) | more than 4 years ago | (#31034078)

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.

Re:From someone who does Genetic Testing (1)

2obvious4u (871996) | more than 4 years ago | (#31034550)

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.

Re:From someone who does Genetic Testing (1, Insightful)

Anonymous Coward | more than 4 years ago | (#31034094)

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

Yet.

Re:From someone who does Genetic Testing (1)

2obvious4u (871996) | more than 4 years ago | (#31034252)

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 long as that can't happen I don't care what they do with the DNA.

Re:From someone who does Genetic Testing (1)

smashr (307484) | more than 4 years ago | (#31034644)

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 government will attempt to obtain personally identifiable DNA samples and testing results from my child without my consent or due process of law.

Re:From someone who does Genetic Testing (5, Insightful)

SecurityGuy (217807) | more than 4 years ago | (#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.

From someone who understands the problem (2, Informative)

Anonymous Coward | more than 4 years ago | (#31034632)

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, then they are a lot more likely to do it. For example, if you were to stick network cameras in everyone's homes, with the restriction that the police were not allowed to access them, sooner or later, the law will change. If the cameras aren't installed in the first place, it would remain a lot more difficult to implement the system and the authorities would have a fight on their hands.

Got that? Nothing to do with what is or is not legal. Everything to do with allowing them to put a system in place which will make it a trivial task to implement full access at a later stage.

No worries. (4, Funny)

Thanshin (1188877) | more than 4 years ago | (#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.

Re:No worries. (1, Insightful)

Anonymous Coward | more than 4 years ago | (#31034374)

Kernel of truth here - consider that in the next ~70 years (the number thrown around in this thread) we're likely to be able to cure things like CF and hemophilia using gene therapy. Single-gene mutations will be first, probably, but more complicated cures will come as nanotechnology allows us to design our own restriction enzymes.

I mean shit, they're already worried about this popping up in this year's Olympics. [wired.com]

We've been doing this for years! (3, Interesting)

mediis (952323) | more than 4 years ago | (#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.

Re:We've been doing this for years! (2, Funny)

jbeaupre (752124) | more than 4 years ago | (#31034690)

They were stolen, molested, then dumped.

avoiding hospitals from now on (1)

darjen (879890) | more than 4 years ago | (#31033864)

yet another reason not to have the rest of my children in a hospital. one was enough... no more.

Re:avoiding hospitals from now on (1)

Wonko the Sane (25252) | more than 4 years ago | (#31033958)

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!

Re:avoiding hospitals from now on (1)

darjen (879890) | more than 4 years ago | (#31034008)

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.

Re:avoiding hospitals from now on (0, Flamebait)

alen (225700) | more than 4 years ago | (#31034178)

until 100 years ago when pre-natal care became accessible to a lot of people something like 30% of women would die during child birth or from complications of having a child. and the child mortality rate was something like 20% of children dying before 1 or 2. all the natural birth people are like the anti-vaccine wackos.

my grandparent's generation went through WW2 in the old USSR and almost every single person i've met who has given birth from the late 1930's to the early 1950's has had a child die either in the womb, during child birth or before the age of 5 due to lack of nutrition. and a lot of people had abortions at the time because they didn't want to go through the experience of losing a child

Re:avoiding hospitals from now on (1)

Wonko the Sane (25252) | more than 4 years ago | (#31034270)

I am not yet a parent so I have no first hand experience but I find the claims of that website fascinating.

They use a lot of new-age bullshit language, but looking beyond that many of their claims require little, if any, suspension of disbelief.

The claim that women are born with all the instincts necessary to successfully give birth is plausible because every other creature on the planet can and natural selection would quickly remove those that can't from the gene pool.

The claim that pain can be reduced or eliminated by working with the natural instincts, being in a comfortable environment that reduces anxiety and exercising during pregnancy is also easy to believe.

The claim that high infant mortality in the past was mostly due to poor hygiene and nutrition also seems reasonable.

I can't evaluate the claim that the birthing process can actually be pleasurable or even orgastic due to lack of first hand experience.

The videos of women giving birth by themselves without any apparent discomfort would support at least some of their claims.

Re:avoiding hospitals from now on (1)

Duradin (1261418) | more than 4 years ago | (#31034552)

Humans have been doing a good job of avoiding natural selection for quite some time now. Yes, animals give birth without aid because that is their only option. Humans, on the other hand, have had midwives, healers, doctors, the local crone, or some other community support for ages. What we've been naturally selecting for as humans is women and children who can survive assisted births.

Humans also have very bad instincts because instincts aren't our sole survival mechanism. Humans can (and occasionally do) pass on knowledge which overrides instincts. So humans with bad instincts can survive to make more humans with bad instincts.

Re:avoiding hospitals from now on (1)

Wonko the Sane (25252) | more than 4 years ago | (#31034618)

That's all true. On the other hand at least some segment of the population retains good instincts in this area and were gracious enough to allow video evidence to document this fact.

I certainly am not calling for an end to hospitals and maternity wards but it's good to look at arguments that go against the common knowledge and reevaluate our assumptions from time to time. That's how we make progress.

How much of what we do is based on sound reasoning and how much is done simply because "we've always done it that way"?

Re:avoiding hospitals from now on (1)

domatic (1128127) | more than 4 years ago | (#31034406)

All well and good unless something goes seriously wrong. If you have a breech or a cord wrapped around the child's neck then things can get ugly fast. Most of the time nature will take it's course just fine but if it doesn't there are a multitude of medically nasty things that can endanger either mother or child you WON'T be able to handle yourself.

My kid had the cord wrap around his neck. A home birth would have killed him.

Re:avoiding hospitals from now on (1)

Wonko the Sane (25252) | more than 4 years ago | (#31034554)

My kid had the cord wrap around his neck. A home birth would have killed him.

I'm not anti-western medicine by any means but I think this evidence [unassistedchildbirth.com] is worth looking into [unassistedchildbirth.com] .

Ehhh... (1)

Pojut (1027544) | more than 4 years ago | (#31033882)

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 (2, Informative)

davidwr (791652) | more than 4 years ago | (#31033904)

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 graduation, keeping only transcripts and basic demographic data e.g. race, gender, name, birthdate, student ID# (which may be the SS#), last known address, etc., ditching all or almost all conduct and academic records that aren't on the transcripts.

Insurance (3, Insightful)

Orgasmatron (8103) | more than 4 years ago | (#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:Insurance (2, Interesting)

Anonymous Coward | more than 4 years ago | (#31034062)

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 those eventualities should be treated with different systems.

Re:Insurance (1)

alen (225700) | more than 4 years ago | (#31034126)

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

Re:Insurance (0)

Anonymous Coward | more than 4 years ago | (#31034582)

The insurance company my company uses required a Certificate of Coverage from my previous insurance company in order to cover pre-existing conditions. Just because your employer provides insurance coverage for you now is no guarantee your next employer will. Or even that your current employer will be able to afford to provide insurance in the future.

Re:Insurance (1)

mdwh2 (535323) | more than 4 years ago | (#31034280)

But this isn't about getting insurance after your house has burned down or you've got the disease. It's about genetics that might make you more likely to show a condition. Plus there's the difference that if you build a new house, you can still get new insurance for that - you're not branded for life as uninsurable.

Insurance is a gamble for both sides - but it's one sided if they get to look at the cards you are carrying, which should be your private information.

The better analogy would be buying a house, and then after that someone saying "Oh by the way, we've done tests on you, and no insurance company will offer you house insurance, ever". But even for houses, the situation isn't that stupid - in the UK at least, you need to make sure insurance is arranged before you buy the house (if you want a mortgage, at least). Surely someone's health is even more important?

How exactly do you propose a baby gets insurance "before" their signs of disease show, if you count their DNA as already having the disease?. Someone's health is not like a house which can be replaced. The other problem is that even if DNA tests aren't routine, people who might benefit from them are deterred from getting them - because of insurance, you're better off not knowing.

These are all reasons why relying on laissez-faire private insurance for health is a bad idea - either there should be Government offered insurance, healthcare, and/or laws that regulate what information private insurance companies can access or use.

Re:Insurance (2, Insightful)

lucian1900 (1698922) | more than 4 years ago | (#31034300)

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.

The day will come when this is used maliciously (4, Insightful)

mbone (558574) | more than 4 years ago | (#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.

Re:The day will come when this is used maliciously (0)

Anonymous Coward | more than 4 years ago | (#31034202)

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

72 years actually, not a century. Also, there's no evidence the Census Bureau gave actual names/exact information about them - it looks like it was more of a "there are x Japanese living in this block, y in that block"... which, ironically, isn't dissimilar to what you can find on American Factfinder now.

Re:The day will come when this is used maliciously (1)

MadCow42 (243108) | more than 4 years ago | (#31034370)

>>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 simply asked to see ID to compare names. However, all the other sheep just put their finger on the scanner and went through... disappointing that nobody else seemed concerned!

Sure, Disney might have non-nefarious intentions, but what about:

  - what's their actual privacy policy?
  - how is the data stored, and for how long?
  - what is their IT security like?
  - what happens if they get broken into and the data is stolen?
  - what happens if they fall on hard times and get a good offer for the information (name + fingerprint)?
  - what happens if they get bought out by EvilCorp?
  - when they go bankrupt and someone buys their old server?

Just them HAVING that data is a concern, even if the intent is 100% "pure". Remember that the US Government can legally collect all kinds of personal data for their databases even when they're specifically prohibited from getting it directly from you... they can simply go to a third party to get it, LEGALLY.

MadCow.

Re:The day will come when this is used maliciously (1)

thijsh (910751) | more than 4 years ago | (#31034616)

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 dozens of entities (including the government, hospital, insurance company and Disney) had (and probably have) access to this data, it can't be guaranteed that DNA or a fingerprint identifies you 100% anymore.

I have no problem with my fingerprint being registered somewhere for access purposes, it's useful. But since fingerprints can be faked even a fingerprint scan of me entering the secure area does not prove it was me entering...
The simple fact is that the more people are registered the less reliable the detection rate will be!

The biggest problem is: the courts will probably blindly convict people on the basis of fingerprints and DNA even years after widespread abuse becomes commonplace... a lot of people will go to jail innocently before they will realize relying on these detection methods for 100% is deeply flawed. And guess what; the battle against this stupidity has already started: http://www.innocenceproject.org/ [innocenceproject.org]

Personally (1)

Dunbal (464142) | more than 4 years ago | (#31033938)

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-fide interest in volumes of DNA data. But what happened to the ethics, here? Was consent given for this information to be released, and was compensation given to the owner of the DNA? Governments are known for their ability to create money (and debt!) out of thin air, but usually you can't get something for free.

Re:Personally (1)

pmontra (738736) | more than 4 years ago | (#31034128)

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.

End run (0)

Anonymous Coward | more than 4 years ago | (#31034004)

So, women should start having babies at home. Pretty soon some screeching group will come along demanding parents have a say in their babies tests. Or, maybe some screeching group will demand the government outlaw having babies outside a hospital. A government sanctioned hospital.

New Hampshire decreased duration (1)

Orga (1720130) | more than 4 years ago | (#31034038)

I noticed New Hampshire used to be listed as indefinitely and now is listed as 6 months. Anyone know the details behind that decision? Too expensive? Privacy concerns? I for one can't wait to be able to test a supervirus against a broad base of peoples DNA's to make sure it hits just the right markers I want it to. (Do I need to clarify that is a joke?)

Recent Experience (2, Informative)

WorkingDead (1393377) | more than 4 years ago | (#31034064)

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 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. There seems to be some personal information attached to the sample so that the state can link it back to the hospital record should they detect something. They don't appear to be able to match the sample to a SSN# because that doesn't get issued to the baby until several weeks later. I made sure to fill out the form and mail it in but there doesn't seem to be any way to tell if they really destroyed the sample or not. By not filling out the sample destruction request form you give the state permission to do what ever they want with it but they are supposed to remove any identifying information if they give the sample to a third party.

Re:Recent Experience (1)

ObsessiveMathsFreak (773371) | more than 4 years ago | (#31034296)

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.

Bioweapons (1)

Orga (1720130) | more than 4 years ago | (#31034132)

Why is everyone talking about using this to solve crime or find/fight genetic disease. This is a huge datastore to check to effectiveness of bioweapons against a large population. Bioweapon effects people with ABAB genes, that's contained in 86% of population. That's the only real use I see for this large of a stroe of DNA information. You can't be sure what percentage of what population contains what DNA markers without great storehouses like this.

U Are What U Are (1)

b4upoo (166390) | more than 4 years ago | (#31034176)

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.

Re: U Are What U Are (1)

Orga (1720130) | more than 4 years ago | (#31034286)

I agree those with the inferior composition that would make them believe they were made by God should no feel shame and should be proud to show their maker designed DNA. However some of us are not of the inferior composition that we believe we were made by God but instead by a trial and error process called natural selection which has left us with imperfections. While I feel this imperfections can be corrected with the proper application of science the world is not to that point yet and public exposure of our DNA details exposes us to manmade threats, not just discrimination but physical biological.

Anemia due to diagnostic testing (2, Interesting)

SilentResistance (960115) | more than 4 years ago | (#31034320)

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 the tests, I postulate that it was their excessive testing that put my daughter in the danger zone of anemia. Had they just left my daughter alone, I think she would have had the typical levels of Hematicrit and Hemoglobin. I think this dangerous, excessive testing was defensive medicine. Diagnostic testing is specifically mentioned in many journal articles on infant anemia.

Re:Anemia due to diagnostic testing (2, Insightful)

Wonko the Sane (25252) | more than 4 years ago | (#31034468)

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?

Re:Anemia due to diagnostic testing (1)

Duradin (1261418) | more than 4 years ago | (#31034624)

It is interesting how it seems that these days every baby pops out with a medical degree for the mother.

I don't see the problem (0)

Anonymous Coward | more than 4 years ago | (#31034434)

If you've got nothing to hide, you've got nothing to worry about.

Think of the children.

Are you all terrorists or something?

Yours sincerely

Mr Stupid

Damn it somebody even posted... (1)

ls671 (1122017) | more than 4 years ago | (#31034460)

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]

Next up (1)

KiwiCanuck (1075767) | more than 4 years ago | (#31034640)

Insurance companies start doing "research".
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