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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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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.
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."
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.
"Lots of people probably don't mind "the government" keeping their DNA on file....
I mind... The last grovernment that tried to use genetics to modify it's society of illness didn't have the technology,
so they just resorted to gassing millions of the "unfit" to protect the chosen.
If you kill the baby before birth because of a genetic code defect, it is the same result. Just less gas and mass of bodies,
but the results are the same. Case in point, both my children had Downs Syndrome like symptoms. If the "lives" program were
implemented as suggested by Rahm Emanuel then I would not have two wonderful children. Did they have downs? Nope, just similar
gene issues, but mentally they are higher than their peers.
Now granted, the PDF references the DBS (Dried Blood Spot) test, but the in womb testing was also pushed by the gyny before the
children were born along with "Counseling"... Pretty "standard" test from talking to other parents. You have the option to
opt-out, but one could easily see that option being eliminated if the "cost" could be justified by the long term health care savings
of the terminated "unfit" pregnancies.
Even our current president stated:
I've got two daughters. 9 years old and 6 years old. I am going to teach them first of all about values and morals.
But if they make a mistake, I don't want them punished with a baby.
But I guess he wouldn't want to teach them to take responsiblities for their actions... no reason to teach that anymore.
I guess I'll get off my soapbox now...
--- Relax, that mass muderer is just trying to reduce our carbon footprint, one fetus at a time...
That is a great point. And that's exactly why "health insurance" as a primary means of paying for health care doesn't make any sense. After all, things like annual check-ups, blood tests, etc - are not "low probability high downside events." Certainly events like pregnancy and birth are not. Clarifying this distinction really helps to see the inherent sensibility of single-payer. We expect that everyone will need health care, though not everyone will be in a car accident or have their house burn down - so those eventualities should be treated with different systems.
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.
IMO there should be no health insurance companies. Get rid of them and have the government pay for your health care, and our costs (the highest in the world) will drop to where more civilized countries' costs are, and our health will be markedly improved. Your higher taxes will more than be made up by not having to pay insurance premiums.
We have the most expensive health care in the world, but by no metric do we have the best care. I blame private insurance. I had hopes for Obama, but his version of health care "reform" seems to me nothing but a gift to the insurance companies.
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Bingo. You hit the nail on the head. There needs to be a distinction between "health insurance" and "health care." There need to be further distinctions between ordinary maintenance-level "health care" (annual check-ups, birth control pills, ordinary sicknesses that are treated with one or two doctor visits), extra-ordinary "health care" (significant devastating acute care problems like broken bones, hospitalizations for serious infections, treatable cancers), and extreme "health care" (untreatable/difficult to treat cancer, chronic debilitating diseases).
People need to realize that they need to pay, out of their own pockets, for maintenance-level and ordinary health care and that they should have "health insurance" to cover the unexpected costs of extra-ordinary health care.
A reasonable role for government would be to cover extreme "health care" expenses for the population as a whole, and to provide subsidies for maintenance-level healthcare and subsidies for "health insurance" to cover extra-ordinary "health care" for folks under a given income level.
By removing the insurance lottery from insurance companies and individuals with respect to extreme healthcare, and removing the cost pass-through to "insurance" for ordinary expenses, I suspect that a lot of the "health insurance" rules would become much easier to discuss and enact.
And the Government will have your complete medical record on file. How long do you think it will be before they start using it for other purposes
Such as?
With your well known mistrust of the police I would think that having the Government involved in your health care would be the last thing that you would want
Yes, I mistrust the police and mistrust the government, but both are necessary for civilization. Other countries have government-run health care, and they have better care, are healthier, and pay a whole lot less on it. And I haven't seen anything that's said that their governments are misusing it in any way, but I have read of injustice and police abuse in those countries.
My dad has government health care (Medicare) and he's happy with his. In fact, I know a lot of folks old enough to be on medicare and I've not heard any of them complain. Plus I'll have government health care for myself in a few years, I'm getting old. But I have my kods and younger friends to worry about, I've already lost two very close friends (one and intimate friend) because they couldn't afford insurance.
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