The government has your baby's DNA

Source: CNN.com

When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.

While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing.

It's simple, the pediatrician answered: 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, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.

In many states, such as Florida, where Isabel was born, babies' DNA is stored indefinitely, according to the resource center.

Read more: http://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/?hpt=C1

---

Well, at least they're screening for genetic disorders!

Next thing you know, they'll be assigning us numbers!

of blood are collected on a special card. The blood is then screened for 40 (40!) congenital disorders and HIV.

http://www.wadsworth.org/newborn/

New York also does a hearing test on every newborn. The goal is to identify problems and begin effective intervention ASAP. For example, if an infant with PKU is not placed on a special diet, brain damage is the result. Infants with congenital hypothyroidism are identified and given the proper hormones. The parents of children with sickle cell are notified so they can take precautions to prevent a sickle crisis. etc, etc.

There is nothing nefarious about this. The program began in 1965.


On edit: this test identified sickle cell disorder in my niece within days of her birth.

It's not the only overly intrusive use of what should be private information. In California if you are diagnosed with cancer your name, address, and other data are forwarded to a state registry. There is no opt out. The data sent to the registry used to be even more intrusive before HIPAA.

be informed, even if their consent is not required. Also, Constitutional rights do not disappear because the government has acted properly so far (as far as we know).

First of all, it's in the sheaf of releases and permissions one signs on admission to the L&D ward, or in advance if one does a pre-admission. Second, it's not exactly likely one's going to miss the sound one's infant makes when a nurse pokes a hole in his/her foot and squeezes out enough blood to fill six quarter-sized circles on a screening card.

from retardation. One i knew and one I gave birth to. It took over two months and a lot of arguing with doctors to just get them to look at my daughter and see what was wrong. she stopped eating and growing and they would not test her for anything. However, I say that thyroid hormone does cross the placenta as she did ok until 6 weeks or so then did a nose dive in growth. I hope the test catches all of the ones effected by this.

It's whether consent should be required, or the parents should be informed, even after the fact, and also what can or cannot be done with the test results. I don't know whether they are truly stored indefinitely, but that leaves a potential for great abuse.

"her positive test for a cystic fibrosis gene is now on the record with her insurance company"

I was leaning in favor of testing, but you just convinced me otherwise - unless results would not be retained or shared with anyone without parents' consent. Too bad we don't have universal health care, which would make the point academic.

But there are definitely legitimate concerns about access, storage and use of this information, especially in this day and age, with the steadily progressive merging of corporate and state power. This past year has shown everyone just how much influence insurance companies have over our government's legislative process, as well as popular attitudes about national health care, through intensive propaganda campaigns. And insurance companies are definitely not motivated by a sense of social responsibility. They are, like all corporations, mandated by legal charter, to maximize profits for share holders. I wonder what the snoozers on this thread, think the insurance companies would do with a database of everyone's DNA, with profit being their primary concern.

Those who are attempting to silence the legitimate concerns of others through ridicule with their "tinfoil hat" and "woo woo" memes, are idiots. The founders of our country said in no uncertain terms that state power is not to be trusted. Skepticism about our government's motives is a part of our civic responsibility, and I don't take kindly to ignorati who attempt to silence others through humiliation, with propaganda catch phrases.

But the thing is, I don't believe we will be able to control access, storage, or use of the results.

Nice sig pic, BTW.

:evilgrin:

Hospital tests are in the constitution? Public health issues are in the constitution?

Are you seriously arguing that *voluntary* hospital visits, and associated state testing, is somehow an unconstitutional search?

Especially if the information is kept.

Manicurists?

After all, if a barber can store your genetic material for life, awful things are bound to happen!

If that's a joke, I don't get it.

Do you really fail to see the difference between government agencies keeping a record of citizens' DNA and the possibility that a private citizen might for some reason decide to keep another person's genetic material?

Would you be ok with fingerprinting all infants too? They are bound to leave fingerprints where anyone could record them anyway, right?

If you're seriously interested in the ethical side of this, check out the Iceland/deCODE project, where every single person is DNA fingerprinted.....

Horrible things did not happen..... YET.

(Cue ominous music)

Besides, storage was not your original point.

And Denmark is not relevant when discussing rights under the Constitution of the U.S.

Besides, if we all keeping thinking all violations of our rights are trivial, it won't be long before we're looking at Denmark enviously.

I was trying to give you helpful pointers towards rather serious discussion on the topic, when a country tried to actually put together a full genetic library.

Here:
http://en.wikipedia.org/wiki/DeCODE_genetics
http://www.guardian.co.uk/science/2004/may/16/genetics.research

My understanding is that a footprint is as unique as a fingerprint. That procedure has been in place for years.

There are reasons footprints are far less an issue.

And then, what the SCOTUS said about it.

Besides, taking a footprint is not as invasive as piercing the skin and drawing out blood and testing that. If a blood test is not a personal "search" what is? How could removing something from you desk be more personal than a blood test?

Don't all infants born in the U.S. get footprints made...?

So they can be sure who went home with whom?

a barber whose services you voluntarily seek. If you don't want him to have your hair, you can always sweep it up and take it with you.

Instead of trying so desperately to be right, why don't you look at the link I gave youm or do some googling and reading on your own?

a hospital whose services you voluntarily seek.

infant's skin to get personal information about her (and you) without even telling you?

(Yes, I know the hospital does it, but, in performing that task, they are functioning as an agent of the government.)

There is also a difference between papers in your attache case, even if you forget it somewhere, and papers you throw out in the trash, which you know is accessible to anyone.

DNA doesn't require skin piercing...
We shed DNA on a near constant basis. It's part of the trash our bodies throw off... and I'm not about to start walking around in a biological containment suit out of fear that somebody might get my DNA.

On testing...
I don't know who goes into a hospital and thinks they won't be tested. It strains all boundaries of reason. You think hospitals don't test patients for illnesses? er...

As far as "the government" having that information, my tin-foil hat is at the cleaner's, so I can't be bothered to freak out about my genetic code being available to others.

On DNA and piercing

The thread is not about DNA in general, but about a blood test, which does require piercing. You gave a hypothetical about hair on a barbershop floor. So I explained to you--or tried to--the difference between hair on a floor and a blood test. Apparently, you didn't get it. (Try reading the description of the California case to which I linked you.) I know DNA does not require piercing or I would have challenged your hair on the floor hypothetical. Apparently, you're trying to manufacture a non-existent argument over whether DNA requires piercing so you can win it.



On testing.

I've been in the hospital more than anyone cares to go. I go for treatment, which requires testing. My showing up there to be treated is my consent to be tested. And I am usually awake when they test me anyway. And they get me or my proxy to sign a consent form. Being born is not showing up asking to be treated, nor is the blood test and DNA testing necessarily for the purpose of treating the baby. But, that is irrelevant. The fact that something happens does not mean it is Constitutional.

I don't recall saying anything about the government's having the information. However, given where your head seems to be, I can understand why you sent your hat out for cleaning. Besides, don't be so cheap. Tinfoil is not that expensive. Make yourself a new one. At least that way, we can identify you before trying to engage you in discussion that requires reasoning or analysis. My bad.

Yeah, no.

PKU is no joke.

but we need to make laws to protect our DNA. Especially in USAinc. or the insurers..etc...can use it against us.

Anything invasive of your body is a search. Doesn't mean it can't ever be done without your consent (or that of your parent or guardian), but it does mean the Constitutional principles apply.

http://www.lectlaw.com/def/f081.htm

When I first read it I thought of posting a pic with a swinging 2X4, seemed apt.

Plasma that is. cant beat $55/week going twice a week =D

but most states test newborns for PKU, a condition that makes it impossible for them to metabolize phenylalanine. Such children have to follow a diet low in it to avoid serious illness.

It sounds like the cheap n dirty multi panel test has a lot of false positives.

We have no Constitutional Right to privacy. Only what the SCOTUS has inferred. We must have a Constitutional Amendment on Privacy Rights !

in violating ordinary privacy standards. Ensuring the health of the next generation is one of those times. The PKU test is mandated by law to prevent serious complications by a simple change in diet.

Mandating health care workers be screened for TB every year is another.

We must enact laws, so that information is not shared or sold to insurers, etc..

but it's a little hard to do when it's part of a permanent medical record.

is easy...

SCOTUS says we have. Ask the Japenese Americans who were imprisoned, er, interned, during WWII. (I don't know if that case was ever overruled.) That's why SCOTUS appointmens are so important. That, and the fact that some of those Justices live a danged long time, and the precedents sometimes much longer than even that.

That is why I am calling for an Amendment or legislation to protect us from (the currently neo-con) SCOTUS.

http://en.wikipedia.org/wiki/Korematsu_v._United_States

The court ruled you had rights, but that the government could overrule those rights at whim when there was a sufficient need.

<<6. This information could never be used against you or other than intended.<<

Famous last words. But then, I'm still nursing a grudge over mandatory fingerprinting to get a driver's license. Civil liberties are eroded away in small steps so no one notices.

We cannot imagine how rightwingers of the future will use that information. Only use with explicit permission for the original intended purposes should be allowed for a defined period, everything else prosecuted.

Were the fears and hypotheticals about deCode found to have any substance in fact?

Their intentions, motivations, and actions? That's also completely leaving out extra-governmental agents like health insurance companies that would love to have information about your DNA so that they can charge you more. After all, it's not like an insurance company has ever done anything illegal... Icelanders have universal healthcare and fewer interested parties - it matters substantially less to them.

I guarantee you that the patients insurance companies (at least), have access to that info.

Takes a wee bit of getting used to. :D

I have to appreciate dry humor..lol..

Are insurance companies prohibited from denying coverage based on these tests? Will these pre-existing conditions be barred as deniable claims?

:shrug:

From the article: "her positive test for a cystic fibrosis gene is now on the record with her insurance company"

Noted upthread by ronnie624. Once word gets out, it's out forever. And you can rest assured insurance companies share this information. But even if they don't, you could be asked about such things when you apply for insurance. If you know you have ever tested positive and don't tell them, you could be cut off later if you seek treatment.

through the conglomerates that seem to own everything, it's not a stretch at all for the "employer-offered" insurance plans to be "interested" in the test results of applicants..

need a long term loan? what's that DNA say about your longevity?

From the article:
"Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe problems, such as mental retardation. Since then, the screening has helped save countless newborns.
Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in state labs for anywhere from three months to indefinitely, depending on the state."

is always required, but it does mean a Constitutional issue exists and therefore that analysis has to occur before we say "no problem about a blood test."

or was it a dream - oh heck, it don't matter. It's gotta be true anyway so who cares where I heard it.

:sarcasm:

can sure use that information to determine if you are insurable and at what price...:rofl:

So I think panic mongers can chill. They are safe.

Message removed by moderator. Click here to review the message board rules.

Seabeyond and company would find themselves with some amazing realty deals.

Obama got more votes in South Carolina than he did in Connecticut. Have a little respect

Seabeyond is a very cool DUer in Texas. It's a shame she is surrounded by a sea of stupid. Don't believe me? Ask her and you do realize the population difference between SC and CT right?

Ask any Southern Democrat. They are surrounded by the dim and dimmer.

And just ask Bill Clinton about South Carolina.

:wink :popcorn:

Without this type of testing, parents would take a newborn home and then , when the child gets sick, struggle through a series of specialists trying to get a diagnosis. Meanwhile, the child may be in pain or be suffering permanent damage as a result of eating a standard diet.

X-Files was science fiction, not a documentary.

I agree. This paranoia is a bit much. They've been taking blood from newborns, and their footprints, for decades.

Perhaps it should.

Or shouldn't.

Interesting movie.

Not to say the stories precisely compare but there are many works of science fiction that have been eerily prophetic.

No metachlorians for you either.

they are taking our DNA
and using it for what and for Who?

Says right there in the article.

:shrug:

Way to overreact.

Yes, unless I misremember the one character was genetically manipulated but the plot focused on the hero who had fewer opportunities because of his genes.

Shouldn't even have to defend civil rights here but Americans can't seem to give away liberties fast enough. I know that is exaggeration but it feels true sometimes.

The water's getting warmer, can't you feel it? As long as our civil rights are eroded slowly no one should have cause for alarm.

There are serious civil liberties threats afoot (because of my politics MUCH I'm more aware of that than most on DU) but newborn screening is not one of them. For one thing, the sort of technology needed to implement what you're talking about is in it's infancy, at best, and what little there is sufficiently expensive that any sort of widescale scheme for many genetic traits (and most of the ones we can test for now are hereditary diseases the patient should really know about, so testing for them is a GOOD thing) would be prohibitively expensive to either implement or hide in a budget.

The blood tests given to infants (which are not a new program by a long shot) are done to identify and treat genetic diseases. Many of the diseases tested for can be treated relatively simply, thus preventing serious or deadly consequences to the infant. For example, phenylketonuria is treated with a special formula for infants, and then a special diet for the remainder of the child's life. If it isn't identified in infancy phenylalanine in the diet causes brain damage and seizures and results in a mentally handicapped child. Newborn screening means those kids just get a special diet and live normal lives. That's a huge benefit that totally outweighs a theoretical misuse of screening materials which isn't even technologically possible.

Are further protections needed on a national level to prevent discrimination by employers and insurers based on the results of genetic tests? Sure. We already have a law on that here in CA and I'm glad we do. But that doesn't have fuck all to do with screening neonates for a handful of extremely serious genetic diseases.

I worked in a clinical laboratory during college, worked at Glaxo in RTP, NC, and a number of smaller labs. I also taught biology, chemistry and physical science and a couple others.

My objection isn't to testing. My objection is to not notifying the parent or obtaining permission and I see that as a lesser problem than preserving the DNA indefinitely without consent.

HOWEVER:
The big problem in bioethics is with people who ignore their responsibility to understand informed consent laws, and don't read what they're signing, and then complain.

I am 100% on the side of informed consent, but based on a long reading of the last 40 years of US policy, and the effects, these parents pretty much guaranteed consent to their children being tested, having the test results stored, and the physical samples being stored for future testing, scientific use, and research, without any parental or personal notification.

The massive *lack* of intellect in people doesn't mean that all science should stop until everybody is a bio-ethicist.

That being said, going back to the OP, if the parents didn't "know" how the system worked, because they couldn't be bothered to read, the fault is theirs. If they didn't sign the appropriate forms, well, that's another issue, and hell should be paid by the folks who didn't ask patients to sign the forms.

Want to bet on which possibility is more likely?

"these parents pretty much guaranteed consent"

boppers, what does that even mean?

This isn't an issue of not having bothered to read.

It's in the packet of paperwork the expectant mother fills out at (or prior to, if she knows what hospital she's using) admission to labor and delivery.

edit: And if you think there's anything nefarious going on here, or the potential for anything nefarious to happen on a wide scale without a HUGE and very noticeable budget increase to this program, you absolutely do misunderstand the science involved.

Where are you reading that retaining DNA indefinitely is by consent in any state? Why are you arguing against informing parents of anything done with their children's DNA?

Why does there have to anything nefarious going on in order to make a Constitutional privacy objection? Why does there even have to be anything nefarious presently?

Why are you writing like you take all this stuff personally? I can't even see how you understand the basic arguments. I know I may sound a little harsh, but why do you believe the rights of the individual are not worth preserving? I don't want you arguing to protect my rights, I think you are incapable. If I am misreading offensiveness into your tone, then fine, I have done it before, misread tone.

People that had "bad" DNA were denied good jobs, because the companies didn't want to deal with future health issues that could crop up. In addition, schools wanted only the best students in their classes. Students that were intellectually superior through genetic manipulation.

Watch the movie again, and pay attention to WHY the parents were choosing genetically superior babies. Children born the 'natural' way were at a severe disadvantage in terms of educational and employment opportunities.

that her baby has cystic fibrosis. :cry:

:hug:

Does the government compensate for the suffering people experience from that disease?

our local State public health lab does these tests for not only all of the newborns in our states, but for the five or so nearby states. So the sheer mountain of data that goes through there is, well, huge-ish. Each infant's splotches of DNA are ganged up on a card with 9 or so other infants' splotches of DNA and ran through the analyses. They're computer coded so the testers have no idea of the identity of any of the splotches of DNA.

After the splotches of DNA are tested, the paper cards are sent off to be stored in a room. Big boxes of thousands of cards, containing multiple babies' DNA on each card. Held by the State. For a bunch of other States. Big room, lots of boxes. So many, that despite the computer coding, the State workers would never be able to actually find one particular infant's card every again durings that child's lifetime.

Really, it's a one-shot few hours of testing, and then in a storage room forever. Folks, this testing finds a narrow panel of serious diseases so that the parents have the information to react and so that the child can have a better health outcome. That's all.

Mandated by law to screen all babies for genetic disorders because the few babies that do show up can have problems - if left untreated these diseases can cause developmental problems, mental retardation or death. Yes, the babies are tracked to make sure that they receive appropriate care. Oooohhhh. Big brother. Scary. Woo woo.

In 10 years, for all your procreation needs.

or any of that Evilution genetics heredity stuff

Where Mulder and Scully were inside the giant underground government storage facility containing everyone's record and sample? Something about "the merchandise" if I recall correctly.

Anyways, my point is that truth just might be stranger than fiction...

But i am pretty bothered by blood collection without parental consent.