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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."
No chance this will be used to solve crimes CSI-style, right?
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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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.
At a minimum, HIPAA should apply http://www.hhs.gov/ocr/privacy/
At least one state, Texas, allows parents to opt out of the screenings.
Welcome to GATTACA! It's both scarry and inspiring at the same time.
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.
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.
yet another reason not to have the rest of my children in a hospital. one was enough... no more.
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...
Living With a Nerd
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.
'Don't worry' said the trees when they saw the axe coming, 'The handle is one of us.'
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.
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.
Seven puppies were harmed during the making of this post.
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?)
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.
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.
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.
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.
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
Everything I write is lies, read between the lines.
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.
Insurance companies start doing "research".
How much should we really trust an organization that doesn't even use SSL for their login page or secure report delivery. If you go to http://www2.uthscsa.edu/nnsis/ and try to get a secure report, you'll get redirected to a login page (http://www2.uthscsa.edu/nnsis/logon.cfm?target=enterdata) that isn't secure. I mean that is like the bare minimum to securing data. How much you want to bet that they have the kids personally identifiable information sitting on some easy to access table? Also isn't this a violation of HIPAA? I know that not using SSL is a violation, also encryption of the personally identifiable information has to be encrypted on disk as well..
http://xkcd.com/683/
I liked this one, totally reminded me of any CSI or any TV really with any mention of technology and/or science in it.
Consent is not required for newborns in Michigan.
http://www.migeneticsconnection.org/policy.shtml
http://www.legislature.mi.gov/(S(ijqt3onmavdo2255ke3jhrbe))/mileg.aspx?page=getobject&objectname=mcl-333-5431
I now live in South Carolina (on the "buckle of the Bible Belt") and find it amazing that South Carolina is the ONLY state listed in the policy PDF whose Retention Practice is "Parent Choice". I fully expected it to be otherwise. We may trail in many areas around the country, but this seems to be very progressive.
My mom always said, "Jim, you're 1 in a million." Given the current population, there are 7000 of me. God help us all!
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.
This is wrong.
The reporter should have checked it and didn't.
The only record the insurance company has is that Isabel got a state-mandated test. They shouldn't have any record of how the test came out. I'd have to check the laws on this, but in New York State, and I think under federal law, DNA tests are kept under very strict legal control.
I know that if you got a test for the breast cancer gene, that would be confidential and the people who are testing wouldn't be able to release it as *your results* to anyone.
As a general rule, doctors have to keep medical records, and everything important has to go in the medical record. If you show up in the emergency room unconscious, it's good for the doctors to know from the record that you had XYZ disease rather than have to spend a week taking X-rays and biopsies while your brain turns you into a vegetable.
If this girl has one gene for cystic fibrosis, it's important for her to know that when she gets old enough to have kids, because if her husband/partner also has a gene for cystic fibrosis, their kid will have a 25% chance of also having cystic fibrosis. Cystic fibrosis means at best a lifetime of lung infections and intensive medical care, and at worst a lifetime of declining health and death by age 20 or so. Most parents in a situation like that use in-vitro fertilization or abortion -- or adoption.
Keeping these tissue samples has turned out to be extremely valuable in the past. I read a Swedish study in which doctors in a cholesterol study had kept blood samples frozen for 30 years. Then, they realized they could use the same samples for a completely unrelated and unexpected purpose -- they started with men who had prostate cancer, and went back to see what their PSA looked like 30 years ago. The result is that it's easier for them to tell men today whether they need to get surgery for prostate cancer (which leaves you impotent and/or with urinary incontinence about half the time) or not.
Now I read in the NEJM almost every week about a new study in which researchers go through the DNA of 50,000 or 100,000 tissue samples and find genes associated with cancer, heart disease, kidney failure, and every disease you can imagine. They use these scans to find the genes responsible for it, and then they can figure out new drugs to treat those diseases.
Empowered patients my ass. These idiot parents are destroying the data bases that will enable doctors to figure out how their children's diseases work, so they can find treatments for them by the time their kids are growing up.
As TFA says, they've published over 20 papers with these samples.
I don't understand how this woman, who is a registered nurse, can claim that she didn't know that babies were tested at birth for several genetic diseases, so that they can be treated before it's too late and their lives saved. Didn't she learn that in nursing school?
There are problems with confidentiality and anonymization, but they can be solved. Of course if the U.S. had a national health care system like every other civilized country, the issue of preexisting conditions wouldn't come up.
And this is why I get all bunchy whenever some congresscritter trots out the phrase "the best health care system in the world". With sufficient money and knowing where to go and who to talk to, you can indeed get some of the best care here in the US. But that ignores the fact that the methods of payment (and the focus on treatment rather than maintenance/prevention, which are also part of the system) are completely screwed up.
We can believe in you for 3 minutes, but beyond that, even the King of All Cosmos can't be expected to wait.
Agreed. I'd add that saying "you can't legally do anything with the information" isn't a justification for collecting it. (To extend the original example, you probably won't let me tape your sex acts, just because the law says I can't post it all over the internets).
And to go to the original issue (newborn screening), (a) faced with an expensive claim, you bet your ASCII that insurance companies will pay to get that newborn screening (a.k.a. "proof of pre-existing condition"), and (b) parents of newborns are pretty much the textbook definition of "not of sound mind"...
Why would anyone want to be an anti-gov't libertarian/anarchist? In my case, a peaceful, christian, fun loving anarchist. Who believes, rather strongly, in the motto: "An armed society is a polite society".
Can my karma get any worse than bad? Let's find out!
Good thing my children were born at home, in my own bed, delivered by midwives who don't like sweeping government programs any more than I do.
Secession is the right of all sentient beings.
Or blood products? Been in hospital recently, where they drew blood? Or took out a body part? How do you know your DNA isn't already on file? And being used against you?
Can my karma get any worse than bad? Let's find out!