What Dangers Exist in the Genetic Age?
LOU WATERS, CNN ANCHOR: Today's announcement caps a decade of effort by U.S. and international research teams. Joining us from Philadelphia is Arthur Caplan, director of the Center of Bioethics at the University of Pennsylvania. You've had some time now professor to think about what you knew was coming here. Some folks who are watching us today are having today to think about the implication of what's on down the road. What are the dangers here? We know about the immense powers for healing in the future for the medical community. But there is a downside, isn't there?</s>ARTHUR CAPLAN, DIRECTOR, CENTER FOR BIOETHICS: Well, there are some dangers. They're dangers we can defeat, but we've got to start working on them too. When you get information about risk, if someone says you are likely to get colon cancer, or you're likely to suffer from Alzheimer's disease -- and that's going to happen at the doctor's office in say, three to five years -- that's something your boss, your insurance company, could also use. And they might say: We don't want hire you. If you're going to have high medical costs, we don't want to give you life insurance. So one of the issues that immediately confronts us is: Are we going to make sure that people have privacy of their genetic information? Another basic question becomes: Can you test someone without their permission? I can get DNA from a glass. I sip it. I leave behind a little bit of tissue there. And I can sample that, and you'll never know. We need to have a law, a federal law, probably an international law that says no testing without the expressed permission of the person. Same thing, by the way, if I die, I could take DNA out of a body, and find out facts. We've seen that with things like discovering whether the child that was alleged to the child of the Czar really was -- Anastasia. That could be done to anybody; and again, some combination of privacy, protection, and informed consent. We really have to get that moving now. Otherwise, we could have this information disempower us.</s>WATERS: We heard from an ethicist earlier today who said that the values of business are bound to trump certain medical considerations. That's the same criticism we hear with HMOs today. What are the dangers involved with the public and private tracking of the same project here?</s>CAPLAN: Well, these groups finally got together to make the announcement today that they had the rough map done. But the devil's in the details, as it often is, the commercial value of genetic information. It's not having, say, a map of the world. It's having a street map of Washington, a street map of Philadelphia, that lets you get around places and makes things. That's going to turn into a privatized, commercial area. And while we can argue, sort of when is that going to happen, it will happen. We're going to see drug companies, biotech companies, move in there, start to turn that information into genetic tests, start to turn it into drugs that are designed to treat particular people with particular genetic makeup. That's a good thing. In this country right now, no payment for outpatient genetic tests. We talk about testing. If your insurance plan doesn't cover it, it doesn't do anybody except the rich any good. So we've got to get coverage going there. And if these drugs turn out to be as wonderful as I think they're going to be -- say a drug that might be treat Art as opposed to Joe as opposed to Susie, well, again, somebody's got to make sure that everybody has access to that. Lou, another way of putting it is, we've got a health care system that has a lot of people on the outside looking in. And they're going to be on the outside looking in at the genetic revolution if we don't fix that health care system.</s>WATERS: Isn't money at the bottom line here? Even if we can get our genetic tests done, can we afford them? Can we afford the drugs it will take to fix the pieces of the puzzle that need fixing?</s>CAPLAN: We've got to get that money moving because the value of the tests, and the value of drugs that would say no more side effects, safer drugs, and much more powerful in terms of guaranteeing a response to your asthma, to whatever your high blood pressure problem is, this is just going to be so useful that Congress, the president, for the next couple of years, have got to fix that health care system to make access possible. I don't think we can put up with having a system with uninsured people, underinsured people, and just the rich getting all the bounty of this. After all, it was paid for by taxpayer money. We've got to make sure that it's affordable for everybody.</s>WATERS: Well, right now we have a problem -- Social Security numbers, for instance, are supposed to be used for Social Security purposes. And as we all know, they are not used just for that.</s>CAPLAN: Right.</s>WATERS: On down the line, we're going to have new laws, as you say. But right now, 35 states protect the privacy and the rest do not. How do you get -- you mentioned an international law.</s>CAPLAN: Yes.</s>WATERS: That seems like a very high hurdle here.</s>CAPLAN: It's a tough hurdle. But again, it's one we can get over if we just finally decide to put the political will into this. You don't want large databases building up of private intimate genetic knowledge. Remember, it's not just your diseases. I might find out that you're adopted. I might find out that you're a test-tube baby. I might find out facts about your relatives just from having DNA from you. So, in order to protect that privacy, we need a tough national law and then international agreements that say no movement of this genetic information without the expressed consent of a client. One more thing; we haven't heard much about it, but in the next census, I could imagine the government saying let's DNA test a sample of people, find out what racial or ethic group they belong to. That's obviously going to be very controversial, but you can use DNA information not just for medical purposes. We can use it for social classification of people. We know that's gotten us in trouble in the past. We've got to start thinking about that for the future.</s>WATERS: A lot to think about, isn't there? Professor Arthur Caplan, with the University of Pennsylvania, we thank you so much for...</s>CAPLAN: My pleasure.</s>WATERS: ... helping us understand this story today.