Big Brother Kidnapping Your Babies' DNA?

Because I was diagnosed with breast cancer at a really young age, doctors routinely ask if I want to undergo genetic testing. I’ve always responded that I’d be happy to give researchers DNA material, and even to arrange for other family members who might be of interest to donate their DNA, too (there’s a small chance there’s a fairly funky genetic issue in question). But they always push, instead, to have me to do the paid genetic testing counseling following by the even more highly paid genetic testing targeted for the patented BCRA genes (for which I’m a less likely candidate). The explanation is at least partly the hospital wants me to undergo the counseling so I can give informed consent to what genetic testing might mean.

Apparently, newborn babies in a number of states are having the opposite problem: doctors submitting their DNA for research without either notice or consent.

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.

[snip]

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. (To find out how long your baby’s DNA is stored, see this state-by-state list.)

Brad Therrell, who runs the federally funded genetic resource consortium, says parents don’t need to worry about the privacy of their babies’ DNA.

“The states have in place very rigid controls on those specimens,” Therrell says.

Now, there may be really good public health reasons for this. But considering increasing efforts to collect DNA databases for criminal reasons, not to mention the efforts to profit off of this, it seems like hospitals ought to be far more transparent about this process.

image_print
  1. Calvin Jones and the 13th Apostle says:

    Brad Therrell, who runs the federally funded genetic resource consortium, says parents don’t need to worry about the privacy of their babies’ DNA.

    “The states have in place very rigid controls on those specimens,” Therrell says.

    Good luck on that, Brad!! You aren’t fooling anyone.

  2. Rayne says:

    Here’s the other side of that problem: what if the state discovers your child’s DNA is PERFECT and your child’s genetic material should be used in stem cell research or cures because of it?

    Agh. It’s a massive though exercise which looks like a science fiction novel waiting to happen.

    • emptywheel says:

      Yeah, that’s precisely my concern. THey keep expanding the content of felon DNA databases to include anyone who has sneezed in a police department. Do that, have 30 years of collections from infants, and there you go!

  3. Jim White says:

    I wonder what Michele Bachmann thinks about this. In fact, I’ll bet all the teabaggers could get upset about this if someone feeds it to them the right way.

  4. earlofhuntingdon says:

    The English are a bit more transparent. They go to enormous lengths to populate their dna database. As only one source of data, everyone detained or arrested for whatever reason, no matter how trivial, no matter the mistake or how quickly they are cleared or found innocent, has their dna taken as routinely as fingerprints. In an unguarded moment, law enforcement and national security types would tell you it is a substitute for fingerprints.

    Notionally, the data is kept for a set number of years, a number the EU has formally found excessive. Odds seem good, though, that they just keep it.

  5. JohnLopresti says:

    There was a recent discussion of the cost factor of a patented test for genetic traits, perhaps npr*s sci fri; the context was how far to let private enterprise go in controlling pricepoint when competition is banned during the patent*s timespan; the philosophic question voiced being whether dna actually ought to enjoy some kind of biologic commons exemption from some practices of private for-profit enterprise, and patent law.

  6. earlofhuntingdon says:

    I would guess that as every cell phone or pda has gps, every baby’s dna is taken at birth. It may not be for the reasons imagined in the X-Files, but it’s for one and probably several reasons, none of which have much to do with public health.

    • bmaz says:

      Yeah, that X Files story line is exactly what I thought of. Remember that storage facility in the tunnels where they supposedly kept all the info?

      • earlofhuntingdon says:

        Miles and miles of twelve foot-high cabinets with samples of dna. In a disused W. VA. coal mine, if I recall.

        What the government is hiding may not be so arcane as aliens, but it may be more frightful, because it is us doing it to us.

        • emptywheel says:

          I bet they give it to the Mormons to store in their vault under the Wasatch front. Why not? They’ve already got the Mormon approved version of our family tree there, replete with all their posthumous conversions!

        • earlofhuntingdon says:

          Oy vey. The Mormons, too, are renowned for keeping detailed records. But to have some schmutzig Mormon convert a Holocaust Jew in order to save her for a god not of her fathers? Das ist schrecklich.

        • PJEvans says:

          I’ve heard they no longer do that. (Proof is lacking, however, and there is some evidence that their claim is, um, truthy.)

          I’ve also heard that the post-death conversions are supposed to be accepted voluntarily by the converts. (Proof of that is also lacking.)

          I’d like suggest to them that it would be a really good idea not to convert, or claim to convert, people who are already dead and can’t speak for themselves.

        • emptywheel says:

          That, and Native Americans, too. Though the Native Americans have traditionally had a harder time embarrassing the Mormons over it to get the conversions “reversed.”

          I took a pre-Columbian manuscript course once with a joint Anthro/JD student (apparently fairly common among Native Americans trying to reclaim land and whatnot). It was pretty damned eye-opening.

        • earlofhuntingdon says:

          I hadn’t heard of their “converting” American Indians. It’s almost as if they are trying to convert those whose assets they covet, including their souls. It’s a mentality I find hard to fathom. I guess it’s easier to compete on a playing field when you have the only team on it.

        • emptywheel says:

          Well, the way I had it explained to me when I lived there during one particularly bad posthumous conversion is that with both Jews (because of the Holocaust) and Native Americans (trial records) there are good records going back some time.

          Dunno, it may well be coveting their goods.

    • PJEvans says:

      And I bet I know why they’re keeping it indefinitely, also.

      They’ll say something like ‘identification’ for kidnapped kids and for remains.

      But that’s not what requires indefinite storage; theyr’e thinking of future criminal activities: they’ll already have DNA samples they can identify people from.

  7. DWBartoo says:

    For the things here envisioned to become reality, they first must become the law.

    How amazingly flexible the “law” appears to be.

    Apparently, it can open its jaws widely enough to swallow virtually any thing.

    Has the “law” become a black hole?

    What is the quantum of justice, when anything (and everything) “goes”?

    I have postulated that a civil war is raging amongst lawyers in this nation, about precisely ALL these many things which stagger the conscience and beggar the soul.

    Yet, I’ve begun to wonder, is that really so?

    Or is it merely, my own, increasingly meager, possibly even futile, hopes which fuel this unverifiable supposition?

    Be there substance corporeal with which to buttress these far too slender and overstretched notions?

    Where lies the truth?

    In the DNA of our stars?

    In the pulse of our still-beating hearts?

    In the conscience of time.

    Or in that space between exhalation and the next breath.

    I wonder.

    DW

  8. LiberalHeart says:

    EW: Years ago I donated DNA to something called The Gene Trust in the hope medical science will find cures for various diseases, among them breast cancer and asthma (both of which I’ve had). I don’t know if that was a good or a bad idea, nor do I know what, if anything, they’ve accomplished or if they’re still looking for volunteers — but you might want to check them out. They sent a nurse to my home to collect the DNA. Here’s some info on them: http://www.mult-sclerosis.org/news/Jul2001/10000PeopleJoinGeneTrustProject.html

  9. Hmmm says:

    Data anyone considers valuable, once collected, rarely dies. Part of why the W White House emails story remains so very unconvincing. (Speaking of which, any recent news there?)

  10. FrankProbst says:

    Late to the party, but here are my two cents.

    DISCLOSURE: I have both an MD and a PhD (Human Genetics) from the University of Michigan, and I’m now a board-certified clinical geneticist at Baylor College of Medicine.

    It’s a bit inaccurate to call newborn screening “genetic testing”, which implies that the testing looks directly at DNA. In reality, while the tests typically do screen for a large number of genetic diseases, they are usually done by looking for abnormal levels of chemical metabolites in the blood, NOT by looking at the infant’s DNA. The samples are usually held for quality control reasons more than anything else. As far as I know, they can be accessed for research purposes only if you have obtained informed consent from the parents, and even then, there are a lot of hoops you have to jump through.

    The statement that “doctors [are] submitting their DNA for research without either notice or consent” is also misleading. Newborn screening is NOT “research” in the technical sense. Medical testing is usually classified as “clinical” (if both the test and laboratory have met all of the appropriate regulatory requirements) or “research”. Research testing is usually done only after obtaining WRITTEN informed consent, but it can be performed in laboratories that specialize in research studies and are less tightly regulated. The results are NOT considered to be part of the medical record.

    It usually IS true that the screening is done “without notice or consent”, mainly because it’s part of the “routine” for every newborn. There are a LOT of things that are part of this routine that most people are never told about, mainly because they’re fairly benign. (For example, almost all newborns are treated for possible ocular gonorrhea, not because it’s common, but because the consequences of NOT treating for it are really bad, while the treatment (eye drops) is benign.) In addition, newborn screens are usually required by law–they’re not something that doctors WANT to do; they’re something they HAVE to do.

    The fear that the samples could be used to make DNA profiles of every baby is understandable, but I think it’s important to understand that generating a DNA profile requires a significant amount of time and money, so for practical purposes, it’s not something that I would lose much sleep over.

    On a personal note to ew: Your willingness to participate in research studies is laudable, but please understand that few (if any) breast cancer researchers are going to want to study your family if you haven’t already had the (expensive) tests for BRCA1 and BRCA2. The reason for this is purely practical. Research studies cost a lot of time and money on the part of the research team, and they’re only going to want to spend a lot of time and energy on you and your family if they already know that your breast cancer was NOT the result of a mutation in BRCA1 or BRCA2. It’s hard for them to do these tests themselves, since the genes are patented. So they’re going to want you to have to test done by the patent holders first, so that they can exclude those two genes as a cause of your early-onset breast cancer. Make sense?

    • DWBartoo says:

      That genes may be “patented” is clear evidence of a failed legal philosophy, a (happily) quiescent “scientific” community, and a social “order” that clearly values money over human beings.

      If these reflections of failure, for that is what they are, remain unquestioned and unchallenged, then our future, as human beings, will certainly be nailed to the cross of the lowest “brand” of expediency.

      DW

      • FrankProbst says:

        The idea of patenting genes is indeed controversial. And it’s an issue that is currently working its way through the courts.

        • DWBartoo says:

          Thank for for responding to my comment, Frank.

          While the issue may be working its way through the courts, given the recent decision of SCOTUS regarding the “rights” of fictitious and court-“birthed” entities, I find myself, to be honest, less than sanguine as to the eventual outcome.

          I am willing to be happily surprised, however.

          Also, your expertise and cogent commentary are always much appreciated.

          DW

  11. BigJess says:

    Would that “working its way through the courts” be “ultimately working its way through the same court” that just gave us the Citizens United decision unleashing unfettered, hidden corporate election spending?