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

Re:CSI

[Sockatume]

Not right now. They're still taking...

*sunglasses*

Baby steps.

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.

names egregious, but not relevant

[neurogeneticist]

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.

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."

Re:From someone who does Genetic Testing

[SecurityGuy]

Oh, thank $DIETY, as long as it's not legal, we're fine. Can we talk about illegal wiretaps by the government en masse in recent years with the cooperation of major telecoms, where nobody will ever be prosecuted?

Your wife's right, nobody's going to go back to a paper card for information. They're going to go to a database where getting this information is easy and inexpensive. Just look to jurisdictions that do or want to take DNA if you're convicted or accused of a crime, or in some cases arrested. If this information isn't in a database now, it will be when someone comes up with a perfectly reasonable and innocuous reason to do it. The abuse of the data comes later. The medical field is great at this, sadly. It makes me angry when I get forms, like I did for umbilical cord blood donation, that talk about how it can save lives of my child or others if they have some condition or other.. ...oh, and we can use it for research if we want. ...oh, and we can also use it for anything else we want, without limitation.

What? No. Stop being ridiculously unreasonable and overreaching. Ok, testing for certain genetic diseases is a good idea. You may proceed. You may not keep the samples. You may not do anything with the information that doesn't directly benefit my child's health without my consent.

Re:GATTACA

[Anonymous Coward]

When did insurance companies start to care about laws? They'll just deny your application without any reasons or make one up. What makes you think their hordes of lawyers wouldn't find a way to weasel around such irrelevant laws?