Burden of Proof
Millennium 2000: Bio-EthicsAired January 3, 2000 - 12:19 p.m. ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
(BEGIN VIDEO CLIP)
JOHN BANJA, MEDICAL ETHICIST, EMORY UNIVERSITY: The great question, I think, is going to be: To what extent are we going to want to impose regulations on technologies and medical interventions that we really don't even know very much about right now as we evolve them.
H. KING BUTTERMORE, TRIAL ATTORNEY: There's no end to what people may request scientists and medicine to do, and the question is: To what extent is science and medicine willing to take risks that they may be called into question.
DR. ROBERT NEREM, GEORGIA TECH'S PETIT INST. OF BIOENGENEERING AND BIOSCIENCE: I believe that God put us here with the message that we should use all of the resources we have to try to make this world a better place for His children, and it's on that basis that I go forward.
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ROGER COSSACK, CO-HOST: Today, on a special edition of BURDEN OF PROOF, the legal community tries to keep pace with the ever-changing face of medicine. Should the law be involved in scientific advancement at the research stage, or should the courts wait in the wings for a dispute to be argued between two parties?
ANNOUNCER: This is a special "Millennium 2000" edition of BURDEN OF PROOF with Roger Cossack and Greta Van Susteren.
COSSACK: Hello, and welcome to a special edition of BURDEN OF PROOF.
As we cross into a new century and millennium, the legal community finds itself at a fascinating medical crossroads.
GRETA VAN SUSTEREN, CO-HOST: Science is making advances in the field of medicine at an amazing rate, but will our foundation of laws be able to keep up?
NEREM: The kind of things that are going to be available, I think, as far as the biology-based technologies of the 21st century, we have literally just seen the tip of the iceberg.
COSSACK (voice-over): Advances in medical technology have given invaluable benefits to our quality of life: longer life spans, cures for diseases, advances in gene research. But as scientists search for answers, moral and ethical questions are emerging almost as fast as the discoveries. Considerable debate lies ahead in the fields of genetic engineering, human cloning and the regulation of transplants.
BANJA: We live in a democracy that, that respects and places a very, very high degree on ethical pluralism, which basically means, you live life according to your values and I live life according to my values. So, we're going to have to be careful about how certain self- interested groups want to inject their own moral vision, their own way of how the world and how morality ought to be. We're going to have to be careful as to how much of that we allow to be injected into the future science.
BRUCE FEIN, CONSTITUTIONAL LAW SCHOLAR: The argument against the law intruding is that simply we shouldn't try to place any limitation on simply knowledge and science, but I think that kind of response is a little too glib, because we're able to understand, I think, certainly from thousands of years of history, there are certain things that the human species don't seem to deal very well with, and it would be perhaps better to try to limit or reduce their development.
COSSACK: For the past three decades, we've looked to the stars for our new frontier, but our next great development will be future advances in the mapping of the human genetic code. Your unique genetic footprint will hold the combination to your medical well- being, the health of your family lineage and predictions of future illness. Who actually owns this most personal description of you? What happens to it when you die?
BUTTERMORE: We could think of competing property rights from your children, your widow, your parents, your employer. Who would have an interest in seeing that there were another you on this earth, and who would benefit from that? Do we set out to create another Picasso, another Pavarotti, another Ted Williams? If we do that, what if somebody decides we need another Hitler?
(BEGIN VIDEO CLIP, "The Boys From Brazil")
UNIDENTIFIED ACTOR: Exactly like me?
(END VIDEO CLIP)
COSSACK: "The Boys From Brazil" portrayed the story of a cloning scientist's mad experiment. At the time, the film was called science fiction. Today, it might be called just science.
In the medical community, the birth of a sheep named Dolly marked a phenomenal breakthrough: the first mammal cloned from an adult cell. But predictions of cloning capabilities among the human race opened the laboratory door to scrutiny and ethical questions.
WILLIAM J. CLINTON, PRESIDENT OF THE UNITED STATES: Today, I am sending legislation to the Congress that prohibits anyone in either public or private sectors from using these techniques to create a child. Until the day I sign the legislation into law, the ban on federal funding I declared in March will remain in effect. And once again, I call upon the private sector to refrain voluntarily from using this technology to attempt to clone a human being.
NEREM: We all have our ideas of where it should stop and the certain areas that we would probably all agree is off limits, like cloning your child, but there's all the middle ground. I wish we had answers.
COSSACK (on camera): The legal and social debates surrounding medical accomplishments are complicated, the long-term consequences are unforeseen, but for future generations, reaching our scientific potential could hinge upon arguments before the court.
(voice-over): In some potential cases involving a couple in which both are infertile, the argument for cloning could be made as the only option for procreation.
BUTTERMORE: The idea of procreative liberty and the freedom that individuals, couples or not, should have to decide whether or not to have offspring is going to have a great bearing on future litigation by those who might think that these rights are proper simply because medical technology has made it so.
FEIN: It may well be that cloning could be very useful in developing certain organs that could replace your heart or could replace other organs and not create these adverse reactions, so it would add to the store of human happiness and pleasantry rather than the other way around.
COSSACK: At the dawn of a new millennium, that human happiness could be at our scientific fingertips, but the question still remains: What will we do when medicine, law and ethics come together and meet at the intersection of the courtroom?
BANJA: Science has a very, very interesting way of creating history, creating the future for us, and it's a future that oftentimes we really can't -- we really can't predict very well, but it's a future that we're going to have to live in.
COSSACK: Joining us today from London is Dr. Richard Nicholson, editor of the "Bulletin of Medical Ethics." And from New York, bioethicist Arthur Caplan.
VAN SUSTEREN: Here in Washington, legal ethics professor Father Robert Drinan and law professor Larry Gostin.
COSSACK: And we'll begin our discussion on bioethics and the law when we return. Stay with us.
(BEGIN VIDEO CLIP)
BANJA: One of the major challenges that we're going to have is balancing a whole number of competing interests as far as who controls this technology, what its scope will be, what do we know about this technology. I mean, an awful lot of folks who are much in favor of it and people who are much opposed to it seem to think they know how it will all eventuate and result.
(END VIDEO CLIP)
COSSACK: Tremendous advances are taking place in the arena of medical science, prompting questions about ethical and moral responsibility. But should the law get involved? That's the focus today on this special "Millennium 2000" edition of BURDEN OF PROOF.
Larry, we're talking about, obviously, the question of scientific progress and the issue of how the law plays into that. Should the law be involved in this?
LARRY GOSTIN, PROF., LAW & PUBLIC HEALTH: I think there are certain times were the law should be involved, if there are problems with, say, safety or efficacy. For example, in human cloning now, we really don't know whether a human clone will age prematurely or have certain kinds of genetic defects. So, safety, efficacy and also if there's going to be any harm produced.
COSSACK: But wouldn't the argument contrary to that be, say: Look, just as you point out, there are certain things we don't know. And if we prohibit this kind of research, or if we regulate this kind of research, we'll never know.
GOSTIN: Well, I think it's -- we ought to be very careful about prohibiting or regulating the research -- just basic research. For example, kind of cloning technology is extremely important in all kinds of biomedical advances. And so, the kind of research is very important. But I think that the end result, that is the cloning of the human being, right now, would be imprudent simply because we have good theoretical basis to believe that there might be real, great harm to that offspring, and we don't want to do that. So the law does need to get involved there.
VAN SUSTEREN: Father Drinan, where should we begin when we try to reconcile sort of the competing interests of medicine, science, law and religion? How do we -- where do we begin on this?
REV. ROBERT DRINAN, PROFESSOR, LEGAL ETHICS: Well, I think, first, it should be in the private sector. And there's been three presidential commissions on bioethics in the last several years. I think they have contributed enormously to the buildup of the consensus.
We shouldn't get the Congress involved unless it's -- until it's absolutely necessary. Furthermore, I think the government has lots of more important things to do, like giving basic medical care to everybody. Even in the United States, there's 44 million people without health insurance; there's 6 billion people in the world now, and at least one third or one half don't have access to the basic. So the law should keep that in mind rather than go do all these refined things.
VAN SUSTEREN: But then, wait -- but then let me ask you this -- let me step back for a second: fetal tissue research, which is a rather controversial issue among the various religions. But medicine will say that fetal tissue could help people tremendously. What about that conflict?
DRINAN: Well, I don't think that the religious viewpoint should trump all the others, and that the religions are divided on this; and that if, for example, a woman has a miscarriage -- involuntary -- and this is a fetus or a embryo, why can't we use that for scientific purposes? The fear is that somehow this is going to induce abortions and would justify them. I don't see that. And I think we should give scientists the possibility, the freedoms to do anything that they think is beneficial to mankind.
VAN SUSTEREN: Are there limits?
DRINAN: There may be limits, but let's hold that until we -- down the line, and that before we say that there's limits, we should remember the history of humanity has always been to suppress knowledge and to curb science, and I remember Galileo, and the Catholic Church has now retracted that and apologized. We should be very slow in saying anything that approaches the suppression of truth is all right.
COSSACK: Dr. Nicholson, what considerations should lawmakers take -- should think about when they are thinking about passing laws that have to do with scientific research in this area?
DR. RICHARD NICHOLSON, BULLETIN OF MEDICAL ETHICS: I think one of the important points to come out of what's just been said is for whom is the research benefit intended? If it's intended for the whole of mankind, that's fine. But the problem nowadays is that so much medical research is not intended for the benefit of mankind. If it were, the scientists would wait for society and the ethicists to discuss the ethical issues to keep pace with them.
But, actually, what happens is that scientists rush ahead because the main aim of so much medical research -- probably 95 percent worldwide -- is either to benefit the shareholders of drug companies or else is the financial or career benefit of the individual researcher. And that is a difference between research that was done by people like Galileo and research done in the 19th century, with research now in the 21st century. For whom is the benefit intended? If we allow completely free reign on medical research, then we are going to continue to exacerbate the inequalities in the world because that research is going to be into expensive ways of salvaging human beings who are already very ill in rich countries, and will totally ignore the health requirements of the vast majority of the world.
VAN SUSTEREN: Art, does law in bioethics, at this point in time, collide in any way?
ARTHUR CAPLAN, BIOETHICIST: They do collide, although I'm amused a little bit about the idea that we're ready to legislate.
I had a meeting not too long ago with a group of state legislators from a large state in the United States and I asked them where their genes were. About half of them thought they were in their gonads, maybe a timely political assumption, about a quarter thought they were in their brains, which somebody said to me was an optimistic assessment, and about a quarter knew that they were in every cell of their bodies.
My point is, legislatively, we may not be quite ready to regulate the genetic revolution if we're sort of trying to find out where genes are and what they do. On the other hand, if we looked at an area like genetically modified foods, it's clear that the public is terrified already, in Europe, in Asia, in the United States, about these foods. There hasn't been much regulation, there hasn't been much attempt to legislate what's going on. And so just letting the science trickle out into the population has resulted, I think, in undo fear, undo worry, undo terror. They do collide, law, science, medicine, ethics, but they've got to work together; we've got to do a better job to bring our legislators and, if you will, judges on board.
VAN SUSTEREN: OK, we're going to take a break.
And up next, your genetic fingerprint: Who owns it? And if science allows, will the law allow an heir to clone you when you're gone? Stay with us.
(BEGIN VIDEO CLIP)
H. KING BUTTERMORE, TRIAL ATTORNEY: I think the idea of procreative liberty and the freedom that individuals, couples or not, should have to decide whether or not to have offspring is going to have a great bearing on future litigation by those who might think that these rights are proper simply because medical technology has made it so.
(END VIDEO CLIP)
VAN SUSTEREN: Welcome back to the special "Millennium 2000" edition of BURDEN OF PROOF.
In the past, courts have heard lawsuits surrounding the property rights of frozen eggs, particularly in divorce proceedings. But with the progress of medicine, similar arguments could someday be heard regarding genetic fingerprints or other yet undiscovered biological bodies.
Larry, let me tell you about a case in California: About eight years ago, a 16-year-old girl was diagnosed with a form of leukemia. Her family did not have a match when it came to bone marrow; she needed a bone marrow transplant. What the parents did was they conceived another child and that child did have the matching bone marrow, which then, of course, helped this 16-year-old who's now been, apparently, been cancer-free for nearly eight years. How does the law address those issues?
GOSTIN: Well, I actually know about that case and it's an interesting one. I mean, the law -- first of all, I think what the law wants to do is make sure that people are healthy and happy and have well-being. And so when a woman wants to have a child and she wants to give that bone marrow to a sibling, it seems to me that it could be a win-win situation; that is, there's no reason to believe that this woman wouldn't love that child that she brought into the world even more, particularly since the child's giving the gift of life to another family member, you have a close bond between the siblings, and the sibling lives.
And if you believe that women have reproductive choice to basically make unfettered decisions, and they make a decision that is based upon love for all people within the family, then I don't think the law ought to interfere with that.
VAN SUSTEREN: So it's none of the law's business in a situation like that?
GOSTIN: In a situation like that it's not. It becomes a lot more difficult if the person is having a child with the express purpose of in somehow undermining that child or wanting to do harm to that child. That's much different.
VAN SUSTEREN: Father, let me ask you -- let me ask you a quick variation of that, father. What if it were done to sell, like, bone narrow or to sell something. Would that make it different? Should the law get involved when that...
DRINAN: We're on the frontiers here, and I don't think that the law should get involved, especially when the information is so, so limited.
The scientists are as moral as the rest of the people. Let them carry this thing out, and even with some governmental funding we're on a horizon that we shouldn't foreclose all our options by saying, oh, we're going to legislate on this, especially with the Congress. They don't know these things. And then, why should we distrust the scientists?
COSSACK: Dr. Nicholson, if, in fact, it shouldn't be against to the law to do what Larry has just described, should it be against the law for someone to sell their organs?
NICHOLSON: I think in general it should be against the law to sell organs, because the seller is always going to be the person who comes out worse. Our experience of countries and situations in which organs have been bought and sold is invariably that the rich people who can afford to buy them do find the poor people, who are the ones forced to sell, do not have any support or backup after the event, and they invariably do worse.
And I think that one has to perhaps take a slightly different view of the law. I'm not a lawyer myself, but certainly in the United Kingdom, our views about issues in assisted procreation is that we wish to try to assess as far as possible whether various different forms of assisted procreation are going to be in the best interests of any resulting child, you know, a case. Some people just argue that just being alive must be the best possible interest, but there is a heck of a lot of real selfishness and self-interest amongst various types of parents involved in this field, and I think, again, the same applies when you get into buying and selling organs. There's a heck of a lot of sheer greed, and I think the law does have a place to set limits upon that.
COSSACK: All right, let's take a break.
We'll have more with our guests on the challenges facing science in the next millennium when this special edition of BURDEN OF PROOF continues.
Stay with us.
COSSACK: Welcome back to a special "Millennium 2000" edition of BURDEN OF PROOF.
The field of science has opened many doors and advancements in medicine, but questions about law and ethics have clouded some of these strides.
Well, Art, what about the issue in -- I want to go back to the issue of selling organs, the notion that, well, this is going to be, you know, a rich man's benefit, but one could argue that everyone makes a profit in this transferring of organs. You know, the doctors make money, the hospitals make money, so why shouldn't the donors make money?
CAPLAN: Well, I think that's the best argument for organ sales, but the fact is, when you look at the sale of organs, we've had some experience with this in terms of blood sales in the United States, and the seller, if you give him enough incentive, doesn't tell you the truth about their health; that's been true, by the way, in India, China, the Philippines, other countries, Brazil, where they have had markets going for some time now. They are tremendous failure rates of the organs, because when you put the money in the hands of the person making the organ available, they'll tell you the truth. And we can't screen, can't test for every possible disease and infection out there.
The other reason...
VAN SUSTEREN: How -- is it any different, though, than when you just sort of get one randomly when someone's in a motorcycle accident or something. I mean, what difference -- I mean, you don't know what you're getting then either?
CAPLAN: Right, well, what you do some someone has died is you have a screen in place to sort of look for those diseases. But when you've got a market running, you can't trust what people tell you as much about what their relative had. You say, is this guy in an HIV risk group. If you're going to get $10,000 if he sells his kidney, everybody sort of looks down and says, well, I don't know, I think he wasn't in an HIV risk group, whereas you get the truth more likely if they don't have any motives to deceive.
VAN SUSTEREN: Larry, let me ask you about this: I mean, there's also the issue -- I mean, organs have -- when you sell an organ, it's gone, but there's some eggs that are sold because women keep producing the eggs. What about in the area of eggs? I mean, you don't know what you're getting then either. I mean, this is the same argument, yet that's done.
GOSTIN: Yes, I mean, I think that eggs are somewhat different from organs. Eggs, as you say, are reproducible. An organ, though, is very, very different, and I fear that there are a lot of poor, vulnerable people, who, if we pushed capitalism to its very furthest extent, just would simply be able to be virtually economically bullied into giving up their organ. It could do them harm. It would be wrong.
VAN SUSTEREN: Let me give you a quick -- let me give you a quick -- you have two kidneys, and you could sell one and live on one. Let's say that you're very poor and that, you know, $200,000 -- someone's going to give you 200,000 for it.
GOSTIN: I personally don't want to -- I don't personally don't want to live in a world that is that uncivil...
VAN SUSTEREN: Should it be against the law, though? Should it be against the law?
GOSTIN: Yes, it ought to be against the law, because we need to protect the vulnerable. Even with one kidney, if something goes wrong with that kidney, then you're dead.
VAN SUSTEREN: Even though they may want the money?
COSSACK: Aren't we...
GOSTIN: Even though they may want the money, because...
COSSACK: Wouldn't we be -- Art, wouldn't we be legislating on the basis of what we believe is moral rather than what we believe is, you know, legislatively correct?
CAPLAN: Possible. Well, it wouldn't bother me completely to see some ethics legislated once in a while. In this case, though, when you're selling eggs, I think Larry is in the right direction; I just want to add, we've seen this kind of deception and lying when there's an incentive out there when you have people saying, I've got the eggs of models up on the Internet and they don't, somebody else says, I'm a healthy person, it turns out you check their genes, they're not, they're just in it to get the 25-grand or the $50,000 that somebody wants to pay to have the superbaby.
We've already got a situation. We're turning it into a marketplace. Leads to, if you will, buyer-beware problems on the customer end. So, if for no other reason than just to keep a lid, if you will, on false advertising, false promising, over-promising, some of this area's got to be legislated and some bans, I think, are appropriate here.
VAN SUSTEREN: All right, we're going to take a break.
Up next, genetic research may soon enable custom-made babies, but are we ready for the repercussions?
(BEGIN VIDEO CLIP)
FEIN: I think history is warning against permitting this, because the potential advantages seem vastly outweighed by the possible mischief of persons who could clone human beings, use them as armies, use them as slaves and all sorts of other things. I don't think we're going to see any time soon the elimination of the Saddam Husseins and the Idi Amins and even the possible return of a Stalin or a Hitler on this -- on this globe.
(END VIDEO CLIP)
(BEGIN VIDEO CLIP)
BUTTERMORE: Why not say we only want to raise only children who can go to Harvard? Why not say we only want to raise children who can be in the Metropolitan Opera? I think, given the opportunity and the number of creative people there are in the world, there is really no end to attempts by individuals. We can be as creative as we want to, but there's no end to what people may request scientists and medicine to do. And the question is, to what extent is science and medicine willing to take risks that they may be called into question?
(END VIDEO CLIP)
VAN SUSTEREN: Welcome back to this special millennium 2000 edition of BURDEN OF PROOF.
Medical research is paving the way to correct genetic deformities, but will altering this important human component cross a dangerous ethical line.
Father Drinan, let me go back to you former life, when you were a lawmaker on Capitol Hill? How do lawmakers handle these issues of science and technology when they are so enormously complicated? I mean, how do they deal with the fact that they may not have a science background and they make the laws?
DRINAN: Greta, I think it is the lobbyists that push them, the pro-life lobby and other people with all types of Christian or religious dimensions. That is one of the major reasons why I think we should be very, very reluctant to allow the Congress to get involved in this.
All these things are very complicated. There is differing points of view, and that we should say, basically, we want to encourage and subsidize and fund all types of scientific research that will bring us good things.
VAN SUSTEREN: But if you had the lobbyists going up there and lobbying and you say: This is what we want. I mean, the practical matter is is that the American people can't really stop the lobbyist?
DRINAN: Well, sometimes they can. There is lobbyists on the other side. There is 34 patient advocacy groups in this city all together that are looking always for the patient -- informed consent. There is no lack of voices that come to the Hill. And I think that it would be premature to legislate on virtually any of these topics that we've been bringing up today.
COSSACK: Dr. Nicholson, genetic research is supposedly and I suppose in two areas, one would be to make perhaps to make the superman, and the other one would be perhaps to create children that wouldn't have any diseases. Should law be involved in either one of those issues?
NICHOLSON: I think law can be involved by setting up frameworks which provide limits to what the people can do, and we simply do not know whether any of these possibilities will ever eventuate. And what one can do is the sort of system we have in the United Kingdom, where one sets up regulatory authorities who keep a very close eye on these activities and various sorts of research have to be licensed by these bodies first before they can go ahead. So one is applying thorough scrutiny before allowing things to go ahead.
But I don't think in any country we're having adequate discussion of whether this is really the root down which modern medical research ought to be going. We're not looking widely enough at the overall economic cost of doing this, and what this does in terms of the already enormous drain on the world's resources that Western medicine consists in.
VAN SUSTEREN: Larry, is this an international legal issue, should this really be discussed in an international forum rather than perhaps in the United States Congress?
GOSTIN: Well, actually, it is, because if you ban something here in the United States, it's very easily to be done offshore. So the technology is transferable. But it's -- really, it's a fascinating question. And one of the things that the people that were interviewed for the program have been suggesting is is that a person who is cloned is the same person that we can clone a Ted Williams or a Mozart...
VAN SUSTERENT: Or a Roger.
GOSTIN: ... or a Roger.
VAN SUSTEREN: We couldn't take it, we couldn't take it, I assure you,
GOSTIN: You know what, it's really not true. Because when you clone somebody, they have the same genetic material, but it's not the same person. We have all kinds of behavioral and environmental influences. We have clones all around us, they are twins, identical twins are genetic clones, but they're not the same people. They're different people, and we have to always remember that.
COSSACK: But that would be seem to be an argument in favor of cloning, therefore, because of the medical benefits one could receive from having an identical twin.
GOSTIN: Well, I think that cloning technology, that the research can be enormously valuable to human beings, in terms of perhaps in the future of creating organs where we need organs and other kinds of genetic therapies, extremely important, so we don't want to do that.
But right now, the clear stopper is is that cloning is not safe and effective. There is some evidence, for example, that Dolly might be prematurely aging, really don't want to take that risk, and that's where the law needs to get involved.
VAN SUSTEREN: Art, do you have a wish list for what the law in this new millennium should be doing about this topic, or do you think the law should just stay out of it?
CAPLAN: Well, I'll mention a couple of things that I think the law should do, I think that it would be very important at this point in time to try and legislate some notion of patenting an ownership over genetic information, it's in corporate hands now. Is that a good idea or not? We should be debating that much more aggressively before that horse completely runs over the fence, out of the barn, and over four pastures.
VAN SUSTEREN: Let me just stop you for one second. Is there lobbying being done by the special interest group that Father Drinan...
CAPLAN: Heavy duty.
VAN SUSTEREN: Heavy duty lobbying?
CAPLAN: Heavy duty lobbying...
VAN SUSTEREN: In what form?
CAPLAN: To keep the patent policies as they are, to make sure that genetic information stays in private hands, we have got a issue of whether that is the best way we should proceed. Lots of lobbies out there, lots of large companies, lots of start-up biotech places, lots of scientists yelling about can they get access to the information? So that is an area.
Genetic privacy, we have got to do something to secure our privacy, people are going to be able to see our genetic information from any cell or tissue, leaving something on a glass, leaving something behind. If we use a Kleenex, they are going to find out all kinds of intimate facts about us. We have got to really secure a national privacy statute. We don't have it.
Last thing, it would be useful to have some sort of legislation over the reproductive technologies, at least minimal testing for safety and health. COSSACK: I'm afraid I have to cut you off because that's all the time we have for today. Thanks to our guests and thank you for watching.
VAN SUSTEREN: Join us again tomorrow at 12:30 p.m. Eastern time, 9:30 a.m. Pacific for another edition of BURDEN OF PROOF. We'll see you then.
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