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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."
Lots of people probably don't mind "the government" keeping their DNA on file, but lots of people probably DO mind private insurance companies having the DNA data:
"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.
"It's really a black mark against her, and there's nothing we can do to get it off there," Brown says. "And let's say in the future they can test for a gene for schizophrenia or manic-depression and your baby tests positive -- that would be on there, too."
Brown says if the hospital had first asked her permission to test Isabel, now 10 months old, she might have chosen to pay for it out of pocket so the results wouldn't be known to the insurance company."
Karma: Excellent. 15 moderator points expire sometime.
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?
We used Census records (supposedly secret for a century) to help find Japanese to intern in World War II.
In the same war the Germans, of course, respected no privacy constraints at all, and used any information they could get for all sorts of much more nefarious projects.
I am old enough to remember that, not only were blacks segregated in the South, but that blood tests would be run to determine just who was and wasn't black, in borderline cases. If DNA testing had been available, I have no doubt it would have been used.
So it seems pretty clear that DNA information, if kept indefinitely in an identifiable fashion, will eventually be used maliciously. A long and lamentable history shows that we can count on that. The question is, are we going to act on this knowledge, or do nothing about it, and continue to let things slide into what could be a very nasty future.
Fixed that for you. It's really just a question of how much lobbyists will have to pay to be allowed to do end runs around GINA. For a baby born now, they've got 70+ years to manage it.
If you were blocking sigs, you wouldn't have to read this.
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.
Plus, this ignores the other side of the case - if you KNOW your kid will never get cystic fibrosis, why pay for insurance that covers that disease? If you KNOW your kid will be diabetic (most likely), why not go ahead and buy the super-deluxe no-copay/no-limit health plan?
Insurance only works in the absence of knowledge by BOTH parties. Genetic testing makes true insurance impossible.
Now you can still have socialized medicine, and many people call it "insurance" but that really isn't what it is. A kid born with a bad heart valve or whatever doesn't need insurance - they need health care. In the US, for a number of reasons, the one has become synonymous with the other. What most people think of as "insurance" is just a discount buying plan so that you're not taken advantage of by price-gouging hospitals and doctors/etc.
Note, this isn't intended as a criticism of either private insurance or socialized medicine. The problem we as a society has it that most people don't really appreciate what both of these things really are, and what their inherent pros/cons are. The fact that people with a profit motive (from insurers to vendors to doctors to everybody else) bribe politicians left and right doesn't help to clarify things either.