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Routine DNA Tests For Newborns Mean Looming Privacy Problems

Posted by timothy on from the let's-just-size-you-for-your-uniform dept.

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."

5 of 268 comments (clear)

  1. GATTACA by quantumphaze · · Score: 4, Interesting

    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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    1. Re:GATTACA by sjames · · Score: 4, Interesting

      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.

  2. Uninsurable by eldavojohn · · Score: 5, Interesting
    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.

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    My work here is dung.
  3. HIPAA by Anonymous Coward · · Score: 5, Interesting

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

  4. From someone who does Genetic Testing by dafz1 · · Score: 5, Interesting

    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."