Brave New World of Infant DNA Data-Basing

One of the most exciting moments in life is to witness the birth of a new child. All hell could be breaking loose outside the delivery room, yet all your attention in those moments is focused on the miracle of a new baby being born. Yet in those exhilarating moments, a small event takes place in hospitals across the country that escapes the attention of most every parent, yet is becoming a matter of increasing concern for parents.

Laws in all 50 states require hospitals to collect a sample of every newborn baby’s blood (from a small pin prick to the baby’s foot). The primary purpose is to test for PKU (phenylketonuria, an inherited disease that can result in brain and nerve damage) and other diseases (California, for example, tests for some 76 different conditions).

Were the test itself the end of the matter, few questions would be raised. However, parents and others in a number of states are beginning to question what happens to those millions of infant dried-blood samples — each of which contains the entire genetic history of the infant, as well as DNA information on his or her parents and ancestors — that are collected each year. Who owns those samples? For what purpose(s) can the information be used; and by who? What agencies and commercial entities can access the information? Is parental consent required? Why should the information be retained at all?

In fact, lawsuits in at least two states — Minnesota and Texas — have been filed to test the limits of such newborn DNA data basing. The conditions under which such DNA samples are collected, retained and used likely will lead to more such lawsuits as parents learn of these factors.

Some states (California and North Carolina, among others) retain the DNA samples collected from newborns indefinitely, and other states keep them for up to 23 years. And while many states technically allow parents to refuse to have their newborn’s blood sample genetically tested, such “opt out” procedures rarely are made known to parents.

The stakes in this data war are high, as researchers and government agencies are realizing the value of such a databank of DNA and other genetic information. The Centers for Disease Control and Prevention has at least since 2002 been advocating for a national databank, calling such “leftover dried blood spot specimens” a “valuable . . . source for public health surveillance and . . . population-based data on prevalence of genetic variations.” The National Institutes of Health  is using $13.5 million in taxpayer dollars to create a national blood sample repository.

These efforts are being aided by federal legislation signed into law by President George W. Bush last year that allows the federal government to screen the DNA of all newborns in the country. The purported justification for this far-reaching, privacy invasive law was the need to have a “national contingency plan” to meet “public health emergencies.”

State governments are moving quickly also to develop regimens for retaining and accessing what Sharon Terry of the Genetic Alliance calls a “national treasure” of data. Michigan, for example, reportedly has set up state-run freezer facilities at a “neonatal biobank” in Detroit.

Researchers and other advocates of DNA data basing are aggressively protecting their turf. The American College of Medical Genetics, for example, recently issued a “position statement” extolling the benefits of dried-blood specimen databases, and dismissing opponents’ concerns as “unsubstantiated and highly exaggerated.” Even the March of Dimes has joined the  bandwagon — vigorously opposing requirements for parental consent (now required only in two states plus the District of Columbia).

With federal law, taxpayer dollars, and otherwise respected agencies like the March of Dimes lined up against them, parents and privacy-advocates trying to stem the tide of infant DNA data basing have their work cut out for them. Let’s hope they are up to the challenge.

27 comments Add your comment

Jennifer

July 13th, 2009
10:26 am

These blood samples would not be able to be used for data purposes without an IRB review, which is designed to protect people.

Shanda

July 13th, 2009
10:38 am

I truly believe in my heart that Sarah Palin had something to do with the the deaf of Michael Jackson. And I hope and pray that somebody will investigate this and bring justice to those responsible.

J. Jackson

July 13th, 2009
10:47 am

I also think that this Michael Jackson thing should be investigated. It could have been Sarah Palin. I hear she has some extra time, possibly for murder, on her hands. We need to bring justice to those who are irresponsible.

C. M. Thornton, III

July 13th, 2009
11:11 am

I, for one, don’t have a problem with a national database of DNA profiles. I believe the benefits to public safety justify this. We all have unique fingerprints and most peoples are on file somewhere. This same type of argument was used before databases of fingerprints were compiled. Welcome to the new age of personal identification.

tj

July 13th, 2009
11:43 am

Why would a white woman kill a wannabe white man ??

Chris Broe

July 13th, 2009
11:53 am

Because MJ stole Palin’s daughter’s baby’s blood sample and used it to clone more children at Wonderland. (The dirty rat).

Frank Whizzle

July 13th, 2009
12:01 pm

If you ain’t got nothing to hide, then what are you worried about? Personally, I wish the government would force us all to live in communal dormitories under constant video surveillance with hourly strip-searches. That would be GREAT for “public safety”.

Thanks for another enlightening article, Bob. Keep exposing these nanny-government, police-state wannabes! PS I voted for ya, man!

Scooter

July 13th, 2009
12:14 pm

Shanda,
Let me guess! You heard that crap in church yesterday. Right?

alohagator

July 13th, 2009
12:46 pm

Shanda….. Michael ain’t dead !!!!

Has anybody seen the body?

Are we, the public, supposed to believe the Jackson family about anything??? Only an idiot would believe those people know how to tell the truth.

What do you figure a media outlet would pay for a picture of Michael’s body? I’ll bet that photo would be worth several million dollars. Wouldn’t somebody in the LA Coroner’s Office or the funeral home have taken a picture with their cell phone? I would have !!!

It’s all a scam folks. Michael Jackson ain’t dead!!!!

Jack Hass

July 13th, 2009
1:06 pm

Hey Bob–

Just wondering if you’ve been to see “Bruno” yet, and what you’re review is.

Loved ya in “Borat”, BTW.

Redneck Convert

July 13th, 2009
1:07 pm

Well, I say keep the DNA data base. Some kids are mean. You can’t tell which one is going to go out and rape and murder and rob. Me, I keep a wary eye on all of them. We can’t have Law and Order if you’re going to put handcuffs on the police.

Charles T.

July 13th, 2009
1:16 pm

Redneck Convert- you can’t have Freedom and Liberty if you give up all privacy to the police.

Christi Raines

July 13th, 2009
1:30 pm

I think the concern of the general public is quite obvious given the previous comments, but I’m going to be wacky and share some actual thoughts.

First, I wasn’t aware that there was obtainable testable DNA in dried blood. If the government is truly keeping only dried blood samples, and not liquid blood samples in these “neonatal biobanks”, I don’t think anyone has much to be concerned about in the forseeable future. The cost of extracting the DNA alone would be astronomical.

Secondly, as harsh as this sounds, I don’t think that most Americans could possibly understand the need or desire for creating a data base of information regarding diseases and other genetic information. While it makes my stomach turn a little to think that this is being done without the consent of the parents, I’m not sure I believe that most could make a truly educated decision anyway. It’s quite possible that it would just confuse and scare some, while most would just stare blankly at the doctor and sign the form anyway.

If nothing else, it gives me something to research, because, as I said, I’m not sure of the plausibility of extracting amplifiable, and therefore, useful DNA, from a tiny dried blood sample. The question isn’t whether or not the sample has DNA present, but whether or not there is enough of substantial quality to run a PCR and then run a sequence, forensic fingerprint or other genomic test.

Fred Lorey, Ph.D.

July 13th, 2009
4:09 pm

this opinion is so full of incorrect information, it should never have been published. Perhaps you should talk to the states newborn screening experts if you want the truth.

Ray Pugh

July 13th, 2009
4:50 pm

Bob,

Although I agree w. at least 75% of your opinions, you have to admit that stuff like this is a bit nutty. If we are ever going to contenders, we libertarians (or whatever the hell you’re calling yourself these days) must shake the image of the tinfoil-hat weaing loons raving about UFOs and flouride in the drinking water. Let’s be part of the solution here…

Michael H. Smith

July 13th, 2009
5:15 pm

Some very good questions directed at DNA databases, which underscores the questionable use of electronic medical records that are so highly touted in the present healthcare debate. With Databases being compromised, as it seems so easily at present, the concerns you raise are clearly valid, Bob Barr. Once anyone’s medical information is compromised only the imagination limits the amount of irreparable damage that might be done to an individual.

The security of databases in general needs to improve and the laws now on the books will likely need amending and strengthening over time as technology continuously makes quantum leaps in the future, for the good and the bad.

IMHO government already has too much information on all of us stored away.

Logical Dude

July 13th, 2009
5:34 pm

I don’t mind the DNA database as long as it removes personally identifiable information.
You know, like the census.

Otherwise, information obtained can be used for the puported purposes of research in trends of genetic markers.

On the third hand, welcome to the next step to reaching the world described in Gattaca.

[...] This is like something out of 1984.  I don’t even think George Orwell could have predicted anything this creeepy.  Please, PLEASE read the full article here. [...]

Jen

July 14th, 2009
8:17 am

Christi, FYI, you can extract and amplify via PCR DNA from DBS. All kinds. In fact, this is the basis for the rapid HIV test.

However, it’s not really all that rapid or cheap to extract and entire human genome from DBS (or any source). And, naturally, the ability to extract DNA lessens over time.

So, all these DBS cards are filed away in drawers and just about always forgotten about.

Christi Raines

July 15th, 2009
12:14 pm

Jen- Thanks for the info. I am linking an article about the process that I came across, for anyone else who might be interested: http://www.molegenetics.com/sites/m/molegenetics.com/files/1055604520.pdf

I have to agree though, that it’s outrageous expensive. Jen made a good point about the long term viability of the samples as well.

Another thing I hadn’t thought about was brought up by “Logical Guy”… are they maintaining the critical health information with person information attached or with basic information, such as hospital where the sample was collected so that if the time comes “they” need or want to perform tests, it will be general census type data or are there still identifying numbers/names/etc… still attached?

Hillbilly Deluxe

July 15th, 2009
5:06 pm

I don’t know anything about the science of DNA samples but do I know there’s no system of safeguards for anything that some human can’t figure out a way to bypass.

Crimson Wife

July 15th, 2009
7:14 pm

I had no idea when I agreed to the newborn screening tests for my kids that CA kept the samples. That is very disturbing to me and I want to know if there’s some way to have my kids’ samples disposed of now that the screening results are in.

[...] article posted here: One of the most exciting moments in life is to witness the birth of a new child. All hell could [...]

Dani

October 20th, 2009
10:23 am

Oh yes, and we believe what our government tells us because they wouldn’t do anything behind our backs. This is America, after all.

Dani

October 20th, 2009
10:59 am

Taking the attitude of “Why are concerned? Do you have something to hide?” is nothing but a cop out. I’m so sick of hearing otherwise intelligent people come up with a remark like that. Do you really think that is what this is about? Get real. It’s all about invasion of privacy, and we see it every day, everywhere. Cameras on the streets, for example. Did “We the People” get a chance to vote for that? Google Earth looking right at our homes? The internet (which I obviously use) that allows anyone with $40 to obtain personal information about anyone (yes, and public information, too. But then you have to ask what is considered public? Anything that is put on the internet is public.)

I was asked the other day to give my thumb print in order to cash a $20 check at Bank of America because I didn’t have an account there. What the hell is that about? I had already presented my driver’s license. What’s next? A blood sample there, too? Ok, this is a privately owned bank. Not the government.

How about taking a job working for the census? I applied and got the job only to find out that no matter your position, a full set of finger prints is required. That wasn’t required in previous years. Why now? Oh wait, let me guess. It’s required in order to keep us safe from thieves, or terrorists, or other boogie men (or women). Grow up people!

Can’t you see that every time this sort of thing happens a little more of our rights to privacy has been chipped away? The reason is always “for our safety”, in one way or another. Have we become a nation of scaredy cats? That we can’t protect ourselves from anything without the help of our government?

Giving up our right to privacy has nothing to do with having something to hide. It has a whole lot to do with giving up your freedom and right to privacy. It has a whole lot to do with people behaving like sheep and going along with the program so they don’t have to think for themselves -and If you don’t think for yourself, someone else will think for you. I see this happening at an alarming rate.

What about the next generation? Your kids? Your grandkids? They won’t have the same freedoms we knew. They won’t even know what they have lost. This is America for pete’s sake! If you don’t want to live free then go somewhere else! Your mucking it up for those of us who still believe in freedom. A Brave New World? Or a world full of chickens? Who is America now?

Jen

February 4th, 2010
1:04 pm

Would this be less of an issue with the majority if it was spelled out to every parent what exactly would be happening with their childs DNA after the initial tests? Most likely not, you still don’t have a say in most states what happens to that DNA.

On the other hand, I do understand the need & purposes for a national bank with this data. It just does not need to be collected by the government with childrens personal information – How does that help? DNA, male/female, and year of birth should be all thats handed over.

Bunnie

February 4th, 2010
7:38 pm

Does Georgia do this? None of the articles I’ve read are open about it. We have an 8 month old, and it is scary.