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."

Comments

GATTACA

[quantumphaze]

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.

Re:GATTACA

[sjames]

It seems to me that rather than put the entire population through the intensive dane brammage of trying to figure out the deliberately incomprehensible insurance policies, not to mention the endless paperwork of showing that you either have insurance or can't afford it, it would make a LOT more sense to just cover everyone and be done with it.

Truly massive amounts are wasted by forcing each and every healthcare provider to deal with each and every insurer's unique and convoluted claims process and by forcing each and every patient to show that they have insurance, determine that their particular insurance will work with that particular provider, and on and on and on.

Then they get to deal with if you have procedure A as a result of B on a friday before the full moon at the low tide and the doctor has real plants in the waiting room, we cover 75.00030456762535646% of the bill (rounded down), except if you ever said booger before the age of 3 in which case we cover 32.7623235624784781% but only if you can hop on one foot. If you have the procedure on any other day, our percentage is based on a spin of the wheel-of-denial (better hope it doesn't land on bankrupt!)

But if you have chronic pain, we will provide you the new FDA approved baby aspirin with cyanide!

Honestly, it's to the point that people might seriously consider the value of "insurance insurance" to cover those times when your insurance finds a new way to let you down when you need it most.

Howsabout instead of all of that, we just cover everyone out of the general funds and be done with it.

Uninsurable

[eldavojohn]

The article touches on insurance but I fear this particular part more than the privacy concerns:

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.

Re:Uninsurable

[SBrach]

Have you ever heard of Insurance or, gasp!, Taxes ?

It must be awful to not understand what insurance is. All insurance (Auto, Life, Fire, Health, etc) works by the majority subsidizing the minority. The majority pays much more in premiums than they receive in benefits due to the fear of the small chance they will require care that is very expensive. The chances of you using as much coverage as you pay in premiums has to be small or insurance would not work. It is not a charity.

It's to get a pool of money so that you can provide services to all without having every single person to pay in full. If you have to pay in full for service then insurance is useless.

First: That pool of money has to equal the total premiums or taxes paid, right? The pool doesn't receive charitable donations and money doesn't just magically appear.
Second: The total benefits paid out can't be larger than the pool or else insurance would operate at a loss, which other than the government apparently, is unsustainable.
Third: The math doesn't lie. Some people will pay much more in premiums than they receive in benefits and some people will pay much less in premiums than they receive in benefits. Insurance operates on the fear that you will be unlucky and be one of the people who requires expensive treatment. The majority would be better off putting their money in a savings account. I am 25 years old and have paid for my own insurance for 7 years. It cost me (including what my employer contributes) about 5 grand a year. With no interest I would have $35,000 right now minus 7 routine check ups @ a couple hundred dollars each cash. If I invested that $5000 a year in a savings account that earns 2% interest starting now, when I am 50 I will have $172,009. I am basically gambling that I will require over $172,000 worth of medical care by the time I am 50. Even though the chances of that being the case are very small.

HIPAA

[Anonymous Coward]

At a minimum, HIPAA should apply http://www.hhs.gov/ocr/privacy/

From someone who does Genetic Testing

[dafz1]

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."

We've been doing this for years!

[mediis]

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.

Re:The important part of the article

[sjs132]

"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...