Thom Hartmann: So given how the Supreme Court has turned our government over to corporations, should progressives, and we’re seeing apparently some evidence of that in the way that the Obama administration is rapidly backtracking on things like raising taxes on wealthy individuals and on the banksters, should progressives perhaps even join the far right militia movement in pushing back against any sort of government intrusion into our lives because it will simply become corporate intrusion at some point which may be even more destructive.
Parents in Texas and Minnesota have filed law suits against governments that, state governments, that are taking, involuntarily and without telling anybody, taking DNA samples from their newborn children. Now they’re doing this to test for genetic diseases, and that seems like a good thing. And, but on the other hand if that information is sold into the public marketplace or if there’s evidence of a genetic disease which may not manifest or may simply be transmissible to future generations, but some insurance company decides they’re gonna pull the plug on coverage or jack up the rates, you know, is that now NOT a good thing?
States are testing for between 28 and 54 conditions and the problem is the specimens don’t always stay in the state labs, they often are given to outside researchers, which is a good thing, you know, looking, but sometimes with the baby’s names attached which becomes a bad thing. So in Minnesota and Texas, by the way, the states are required to destroy these DNA samples but only if you ask and you fill out a form. Most parents don’t even know to ask, they don’t even know what’s going on.
Dr. Art Caplan is with us, he is a medical ethicist, professor of bioethics, director of the Center for Bioethics at the University of Pennsylvania, author of 25 books including his most recent, “The Penn Center Guide to Bioethics,” the website of course Med.Upenn.edu, Dr. Art Caplan, welcome back to our program.
Art Caplan: Hey, thanks for having me.
Thom Hartmann: Your take, this, there are layers of complexity in this story. At the top level, at the biggest picture level, your take on hospitals involuntarily taking DNA samples from newborn babies and screening them for genetic diseases?
Art Caplan: I think, Thom, it’s a good idea that we take a blood sample, which is what we’re talking about, a heel stick as they call it, a little to the baby’s heel, when every baby is born to look for genetic diseases. And let me be clear, I don’t think, do not think, we need parent’s permission. The reason we’re doing it is to help the babies because there are some genetic diseases where you change the infant's diet right away, get them off breast milk, get them off formula, you can prevent mental retardation and death. So these are rare, they’re not common problems, PKU is one listeners may have heard of.
Thom Hartmann: Right.
Art Caplan: You don’t want to wait for the parents to give permission to do that, you gotta do it right at birth, you gotta move fast, and anyway we’ve already established through many, many court decisions, that when it’s a life and death situation for an infant you can override parental denials. So at the birth, I’m all in favor of taking this blood stick, trying to help save infants, moving rapidly, moving…
Thom Hartmann: Right, and I wouldn’t disagree and I don’t think any reasonable person would. But there’s a 'but' coming isn’t there?
Art Caplan: There is a but. Then we take that blood sample and put it on a cardboard cord, kinda imagine blotting something onto a piece of paper. You put the identifying name of the baby and maybe some other information, date of birth, parents' names, and you send it off to your state capital. That’s been going on probably 40 years. Now, why? Well, there are two reasons. One: you can look in that set of cords and figure out whether the incidence of some diseases that babies have is going up or down like cystic fibrosis or Down’s syndrome.
Thom Hartmann: Right, we’re talking about things, epidemiology.
Art Caplan: Yep, basic epidemiology. Interesting enough, you don’t need anybody’s name to do that.
Thom Hartmann: Right.
Art Caplan: Just look at a lot of cords.
Thom Hartmann: Yeah, all you need to know is the geography.
Art Caplan: Correct. The second reason is to do research where you might want to have somebody’s name. And that’s where the problem is. We’ve had this system set up for a long time, I can’t say anybody ever abused it, I don’t know of one case where anybody’s been harmed, but in an era in which the insurance companies, since we don’t have health reform, we’re starting to get nervous and saying well if you have cystic fibrosis or a risk factor for this or that maybe we won’t insure you, maybe it’s not such a good idea to keep identifying information in these big state databases.
Thom Hartmann: Right. And in fact that’s, that is, you know, a concern. This article by Elizabeth Cohen, CNN senior medical correspondent talking about Annie Brown’s daughter Isabelle when she was a month old they took a blood sample, they found that she did have a genetic disease, she didn’t have it full blown so it wasn’t anything that anything needed to be done about. But it could disqualify her. You know, some health insurance company could down the road say no we’re not gonna insure you. And if you have children, we’re definitely not going to insure them, because this is a transmissible genetic disease. And do we really want this kind of information in the hands of private corporations that have not the public good as their primary goal, but private profit as their primary goal? Or, for that matter, do we want it in the hands of government agencies who state that the public good is their primary goal and yet increasingly are being taken over by corporate interests?
Art Caplan: And the other problem is sometimes DNA databases get handed over to state police, to FBI, all kinds of folks have an interest from government agency to government agency. So lest listeners think this is another one of these problems with no solution I have an idea here.
Thom Hartmann: Okay, what’s that?
Art Caplan: The idea is why don’t we anonymize, take out the identifiers, but keep them coded and create a third party whose job it is to decide if it ever makes sense to break the code and relink the data. In other words…
Thom Hartmann: Right this is basically you know, there was a study report in the New York Times recently where they went back and discovered that there was this huge blood, a whole bunch of blood that had been drawn of GI’s in the ‘40s.
Art Caplan: Yes the defense department databank, yep.
Thom Hartmann: And they were able to discover that, you know, this had to do with hep c which nobody knew even existed in the ‘40s.
Art Caplan: Right.
Thom Hartmann: And so some brilliant epidemiology was able to be done. They tracked a bunch of these guys down in their ‘70s, ‘80s and ’90s, they found that unless they were alcoholic it didn’t seem to affect mortality, which was a big shock for everybody. And, you know, that kind of thing couldn’t have been done. But they were semi-anonymized in as much as the only identifier in all these was the dog tag number, the serial number, the military serial number. So there was a government agency that you would have to go through to get access to that information. And so you’re suggesting that that be the case for all babies.
Art Caplan: Right. I am and I think it would be a mistake to throw this stuff out and here’s why. Someday we may find something that says, you know what, if your baby had cystic fibrosis risk factors like the case you described, we now have a medicine and we want to notify all those people who are now 25 or 30 years old that there’s something out there for them, we need to have that database.
Thom Hartmann: Right. OK, so let’s take this a step further, Dr. Art Caplan, in the minute and a half or so we’ve got left. Britain right now is building a national database…
Art Caplan: Yep, UK Databank, right.
Thom Hartmann: Right, of everybody’s DNA. And they started out with anybody who has any contact with the police, and they’re growing it from there. And so they can very quickly find if somebody’s raped, who the rapist is, they can very quickly find if somebody’s beaten up who the mugger is, if there’s some skin tissue left behind. Is, if, you know, with a benign government that seems like a reasonable thing. But what if the government starts becoming more like China or Singapore?
Art Caplan: Yeah. It’s a big danger. I think you’ve got to separate out these police uses from research uses. For research, let’s set up a trusted third party, I don’t care if it’s made up of people from disease groups, ordinary citizens…
Thom Hartmann: And yet at the same time if it was your daughter who was raped wouldn’t you want the rapist to be immediately caught?
Art Caplan: I absolutely, I would but I may have to yield on that one some notion of protection of privacy because it’s gonna be very easy to abuse this system. On the other hand, maybe I’m happier if you’re convicted of crime you have to put your DNA sample in and the British…
Thom Hartmann: Well that’s where they started.
Art Caplan: And the British parliament just accused and arrested.
Thom Hartmann: Yeah that’s where they started and some states are doing that now in the United States and I don’t disagree with you that a person convicted of, at least a violent crime.
Art Caplan: Yep.
Thom Hartmann: Particularly sexual violent crimes, rape and things like that, that tend to be repeat offenders, that that might be the place to start.
Art Caplan: The good news is there are things we can do to protect ourselves here, we’ve gotta start pushing our legislature.
Thom Hartmann: Yeah. Dr. Art Caplan. His most recent book, “The Penn Center Guide to Bioethics.” Thank you doctor.
Art Caplan: Hey, thanks.
Transcribed by Suzanne Roberts, Portland Psychology Clinic.
