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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."
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.
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?
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.