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Routine DNA Tests For Newborns Mean Looming Privacy Problems
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."
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.
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Not right now. They're still taking...
*sunglasses*
Baby steps.
No kidding!!! What do you say at this point?
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 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.
My work here is dung.
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."
Karma: Excellent. 15 moderator points expire sometime.
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.
YEEEEEEEEEAAAAAAAAAAAAAAAAAHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!
('cause you forgot the real punchline. This public service announcement added to sneak past the lameness filter.).
At a minimum, HIPAA should apply http://www.hhs.gov/ocr/privacy/
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.
As the island of our knowledge grows, so does the shore of our ignorance.
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."
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.
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.
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.
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
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.
See that "Preview" button?
Hmmm that sounds like pedo reasoning to me. Maybe we should dig up this guy's cellar.
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.
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.
Surely that depends on the crime?
++ Say to Elrond "Hello.".
Elrond says "No.". Elrond gives you some lunch.
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.
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.