Millennium 2000: A Baby by DesignAired January 3, 2000 - 10:15 p.m. ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
JUDY WOODRUFF, CNN ANCHOR: Pick the sex, the hair color, fix any genetic problems, increase their intelligence, give yourself choices like you were buying a new car. But designer babies may be more than we bargained for. It's all here.
A perfect child, that is what many parents hope for. And with this new genetic research, that hope could become reality.
BERNARD SHAW, CNN ANCHOR: Other people also look to sell manipulation as a way to cure diseases, still others fear its misuse, and they talk of a master race.
Our CNN medical correspondent Rhonda Roland with what could be.
RHONDA ROWLAND, CNN CORRESPONDENT (voice-over): When some couples decide to have a baby in the future, this is where it will likely begin. Behind closed doors, with a genetic counselor. The process may never even involve sex, sex will just be for fun.
UNIDENTIFIED FEMALE: And all of our cells, most of our cells we have chromosomes.
ROWLAND: By the year 2003, scientists expect to completely map the entire human genome, they will have identified the thousands of genes causing inherited diseases and disorders.
UNIDENTIFIED FEMALE: They are the structures in our cells that contain the genes, which is all the inherited information from our mother and father.
ROWLAND: Within a decade or two, it may be possible to screen couples for risk of disease before conception even occurs.
DR, NATHAN SLOTNICK, GENETICIST, EASTERN VIRGINIA MED. SCHOOL: I can envision that you and I and the rest of us in this room will sit down, maybe 20 years from now with a big bottle of champagne and sort of toast how reproduction really has changed. I anticipate that in 15, 20 years from now we'll be able to really know what we're pre- disposed for in terms of reproductive abnormalities.
ROWLAND: We'll also know the genes for an enormous range of traits, eye and hair color, height, intelligence, longevity. SLOTNICK: We will, I'm sure, have the ability to increase the likelihood of male babies being born or female babies being born or blond babies or black-haired babies, that kind of ability will continue to grow and expand.
ROWLAND: But today, when a couple sees a genetic counselor, it's usually only after something has gone terribly wrong.
UNIDENTIFIED FEMALE: Most people have 46 chromosomes. He has 47 because there's an extra 18. And that's where the twice on the 18 comes from.
ROWLAND: Sam Strickland (ph) and Mandy Lemky's (ph) son was born with a deadly chromosomal disorder, known as trisomy 18, instead of two chromosome 18s, he had three.
DR. PAUL FERNHOFF, EMORY UNIVERSITY GENETICS: Probably over half of the children have very severe heart disease, many others have kidney problems, and others in the way their fingers and toes are shaped, and the position that they're kept in.
A routine blood screening test given early in pregnancy failed to pick up the defect.
UNIDENTIFIED FEMALE: When this happens, it's by chance, there's nothing you can do to control it, there's nothing you did to cause it. It's just chance and sporadic occurrence, it is neither of your fault.
UNIDENTIFIED MALE: Hand prints, how much he weighed, age, length.
ROWLAND: Strickland and Lemky buried their son just weeks ago. They say they won't leave their next pregnancy to chance, and they don't have to. Because as other couples have found, there are options.
A new technology introduced in the mid-1990s, already allows doctors to study an embryos genetics to a certain extent before pregnancy ever occurs, the procedure, pre-implantation genetic diagnosis, reproductive biology associates of Atlanta suggested the technique to Rich and Barb Reuth after several pregnancies were lot to miscarriage. Doctors suspect chromosomal defects.
BARB RUETH: They explained it as a way to look at each of the embryos to find out maybe some of the reasons why we had miscarriages and had so much trouble in the past.
ROWLAND: Couples electing pre-implantation genetic diagnosis must have children through in vitro fertilization, the male sperm and female's eggs are placed together in the laboratory, incubated outside of the body. When the embryos are three days old, and consist of just eight cells, one cell containing all the genetic information is carefully removed, and analyzed for abnormalities. Then, only those embryo that appear healthy and free of genetic defects are returned to the woman's uterus. DR. HILTON KORT, REPRODUCTIVE BIOLOGY ASSOCIATES OF ATLANTA: Right now, the technology is somewhat limited, we're able to look for trisomy abnormalities, which are the commonest abnormalities, Down's Syndrome being one of those, and other simple chromosomal abnormalities. This technology is expanding very, very rapidly and in the near future, will be very, very expansive.
ROWLAND: The technology can also detect gender, and there are over 300 diseases linked to sex, such as hemophilia. The Jones Institute at Eastern Virginia Medical School is one of a handful of infertility clinics in the United States using pre-implantation genetic diagnosis to screen for diseases linked to particular genes.
This particular immutation that we are looking at is for cystic fibrosis, but we can look at mutations for other diseases, Tay-Sachs, hemophilia, sickle-cell anemia, x-linked diseases.
DR. WILLIAM GIBBONS, MEDICAL DIRECTOR, JONES INST.: From the standpoint of looking at single gene defects, the list grows every single day.
ROWLAND: Genetic testing gave the Rueths the information they were looking for, but at a cost. Out of eight embryos, only one was found to be free of chromosomal defects. Unfortunately, it did not result in a pregnancy. The couple had no regrets.
RICH RUETH: If you can decrease your orders of continuing the heart ache and the disappointment, I think there's not a couple that wouldn't go that route.
ROWLAND: There is a happy ending. The Rueths gave infertility treatment another try. They ended up with only three embryos on their second go around. The clinic said that was too few to risk genetic testing, since the procedure can possibly harm the embryo.
BARB RUETH: I was a little torn. I tried to push a little bit, like, can't we test these.
ROWLAND: The Rueths crossed their fingers. All three embryos were put back. One resulted in a pregnancy. The due date: January, 2000.
R. RUETH: Wow, there's the foot, look at that foot! Beautiful.
B. RUETH: This is our special baby, this is our miracle baby. If it has special needs, that's the way it's going to be. And all signs are, healthy, normal baby at four pounds.
ROWLAND: Only about 300 babies have been born worldwide with the help of pre-implantation genetic diagnosis. The oldest children are three or four. All indications are they're normal, but questions linger about the safety of the procedure.
Experiments being done in this laboratory at the University of Massachusetts could eventually eliminate that concern and help ensure couples create only healthy embryos. Instead of doing genetic tests on embryos, scientists are analyzing the genetic makeup of sperm before conception occurs. So, if couples are at risk of producing a child with a particular disease, scientists would select only those sperm with the right genetic compliment that, when joined with the woman's egg, would not cause disease.
JIM ROBEL, REPRODUCTIVE PHYSIOLOGIST, UNIVERSITY OF MASSACHUSETTS: So all we have to do is not manipulate the female's genes at all. With the males, we simply need to find which sperm carry the disease gene versus which sperm carry the normal gene. If we choose those sperm that carry the normal gene and match those sperm with the female, then that offspring would be perfectly normal.
ROWLAND: Couples could then avoid making hard choices regarding their embryos and avoid the disappointment of not ending up with any that are healthy.
(on camera): Today, doctors are using reproductive technology to prevent devastating diseases of childhood, but soon, sciences predict, they'll be able to test for a number of diseases of adulthood. In fact, the Genetics and IBF Institute in Virginia already test embryos for Huntington's Disease. Only those embryos free of the disease are put back in the mother.
(voice-over): Making it possible to one day eliminate Huntington's Huntington's disease altogether. It's also possible to test embryos for genes that put women at risk for breast cancer, raising the question: Where do we draw the line in determining which diseases embryos should be tested for.
DR. HILTON KORT, REPRODUCTIVE BIOLOGY ASSOCIATES OF ATLANTA: Given an embryo that's at risk for a disease, do you decide not to replace that embryo because this embryo is at risk as opposed to will definitely develop a condition? This particular embryo, which is at risk for breast cancer, that woman may go on to be a fantastic artist, pianist, scientist, may discover the cure for cancer.
ROWLAND: Because of the cost, $10,000 a try, risks from fertility drugs, emotional stress and limited success rate, infertility specialists don't expect these technologies, which can prevent devastating health problems, to be used routinely in the near future.
Today, most defects are discovered during pregnancy, with routine genetic screening tests, tests which are still imperfect. If the news is bad, couples are left with the decision to continue or end the pregnancy. But with some medical conditions, there is now another option: performing surgery on the fetus before birth.
UNIDENTIFIED FEMALE: Daddy's boy! Look at you! Yes!
ROWLAND: Jill and Fred Liguori found out through an ultrasound test that their son, Nicholas (ph), had spina bifida: His spinal cord was exposed.
FRED LIGUORI: A kid with spina bifida generally have, you know, paralysis of their lower limbs, they can generally walk as babies or as children with braces and crutches, but as -- and they get in their adolescence they generally end up in wheelchairs.
ROWLAND: Children with spina bifida can also have severe learning disabilities. Through their research, the Laguoris discovered surgeons at the Children's Hospital of Philadelphia were doing some amazing surgery on fetuses while they are still in their mother's womb.
JILL LIGUORI: I immediately knew that, you know, the surgery is there to help improve these children's lives, it's not going to take spina bifida away.
ROWLAND: The operation used to closed Nicholas' spine is risky. Surgeons have two patients to care for.
F. LIGUORI: And I just had to let her go and just go wait, and I remember feeling -- it was a very hopeless feeling, it was very -- I was scared.
ROWLAND: Two months after surgery to repair the defect, Nicholas was born.
F. LIGUORI: Hi!
J. LIGUORI: Hi, Nicholas!
UNIDENTIFIED MALE: He says daddy's hands are cold.
ROWLAND: Nicholas is now close to a year old. Studies show he and others who have undergone the surgery are on track for normal mental development.
UNIDENTIFIED FEMALE: Put your hand up. Up on your knees.
ROWLAND: It's too soon to know if these children will walk on their own.
DR. SCOTT ADZICK, CHILDREN'S HOSPITAL OF PHILADELPHIA: I need to be cautious about this, It's still early to tell, but we're -- we're encouraged by it.
ROWLAND (on camera): Surgeons here at the Children's Hospital of Philadelphia are taking in utero surgery a step further. When a mother is only three or four months pregnant, they're actually giving the fetus a bone marrow transplant. The goal is to cure disease before birth.
(voice-over): The procedure seems simple. A needle is inserted through the uterus to reach the fetus, similar to the commonly-used amniocentesis test. It will be at least a year before researchers will be able to say if the bone marrow transplants done during pregnancy have cured their young patients.
DR. ALAN FLAKE, CHILDREN'S HOSPITAL OF PHILADELPHIA: If we can do that, then we can treat some very common diseases, like sickle-cell disease, like palacemia (ph), like many of the other immunodeficiency disorders, a lot of the diseases that are treated currently by bone marrow transplantation after birth.
ROWLAND: It's believed the immune system is more amenable to treatment before birth. For now, in utero operations are limited to fixing physical defects in some immune disorders, but scientists expect that to range with the unraveling of the human genome.
FLAKE: I think, looking years into the future, we might very well treat all human genetic disease in the fetus.
ROWLAND: They'll use what's known as gene therapy, delivering the desirable gene to the patient through what is hopefully an innocuous viral vector. Fetal gene therapy is already being done successfully in laboratory animals. Gene theory has been used in children and adults for the past decade with mixed results. Scientists predict it will be more successful when they're able to do it safely in the human fetus.
ADZICK: But there are compelling reasons to want to do gene therapy before birth, before the disease manifestations start. I mean, wouldn't it be wonderful to be able to treat cystic fibrosis, say, before birth, before the disease effects the lungs? I think it's not a matter of if, it's just a matter of when.
ROWLAND: Dr. Adzick and other scientists, like Dr. French Anderson, considered the father of gene therapy, want to see fetal gene therapy used only to cure human disease, but the technology has the potential to alter humans in other ways, whether it's strength, longevity, intelligence.
DR. FRENCH ANDERSON, UNIV. OF SOUTHERN CALIFORNIA: Any time one has the technology to put a gene into a human to being treat a disease, you have the technology to put a gene in for any other reason.
ROWLAND: For whatever reason a new gene is used to alter human life, it also has the potential to change the germ line, that is, the genetics of generations to come.
Scientists in this University of Florida laboratory have just proven it is possible to permanently change an animal's genetic blueprint and that of two future generations. The experiment was designed to use gene therapy to treat high blood pressure in rats, but there was an unexpected surprise. The rats were protected from hypertension for life. Scientists got another surprise.
MOHAN RAIZADA, UNIV. OF FLORIDA BRAIN INST.: The findings were unbelievable. We found that the offspring were completely protected from hypertension.
ROWLAND: Neither the rat's children or grandchildren developed high blood pressure. The germ line was permanently altered, raising the possibility that high blood pressure could be wiped out.
Being born already cured of disease, eliminating human suffering caused by the devastating medical consequences, it may sound like science fiction. ADZICK: Well, 15, 20 years ago it was science fiction. And what we're talking about now sounds like science fiction, but I am quite sure that it's the future reality.
ROWLAND: How far will we go to create better babies?
KORT: If a better baby means a healthier baby, I hope we have as much technology as possible. If better technology means babies with only blue eyes, with blond hair that are taller, stronger, I hope that technology never ever is utilized.
ROWLAND: Can we control it?
GREGORY STOCK, DIR., UCLA PROG. ON MEDICINE TECHNOLOGY AND SOCIETY: It is a short step to go from selecting virtual children, selecting which embryo is implanted, to thinking, well, why not go in and do an extra step and do some sort of a genetic enhancement.
ANDERSON: The only protection society has from a slippery slope that basically leads to a Gattaca-type environment, designer babies, a master race, is public awareness, public scrutiny.
STOCK: I can imagine a situation where far from a parent being looked at as frivolous, where a child would say, why am I the slowest in the class, why am I going to live 20 years less than those who got these genetic enhancements.
ROWLAND: The question no longer is if science will have the ability to use genes not only to cure disease but to enhance generations to come, but when and will we be ready.
Rhonda Rowland, CNN.
SHAW: Be assured, more of our "Millennium 2000" focus on designer babies when we return.
WOODRUFF: You've seen what scientists can do with reproductive technology. The question is, should they. We'll be joined by two experts with somewhat different perspectives.
ANNOUNCER: Thomas Jefferson said, "our laws and institutions must go hand-in-hand with progress of the human mind."
ANNOUNCER: Birth defects occur in nearly in 20 pregnancies.
SHAW: Welcome back.
We want to discuss the future of reproductive technology and the bioethical dilemmas it may give birth to.
WOODRUFF: Joining us now from the New York bureau: Dr. Jamie Grifo, director of the division of Reproductive Endocrinology at the Mt. Sinai New York University Medical Center, and Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania.
Dr. Grifo, to you first. What is it that families who come to you want you to do for them? What do you do for them?
DR. JAMIE GRIFO, REPRODUCTIVE ENDOCRINOLOGY, NEW YORK UNIVERSITY: Well, everyone wants to have a healthy baby, and I don't think there's anything wrong with trying to help people have healthy babies and prevent genetic diseases. We're all concerned about the misuse of these technologies, but just because you're afraid of misusing a technology does not mean a technology should not exist.
WOODRUFF: How much can -- I guess what I'm asking is, what do you do now, what are you now able to do, and then contrast that with what you and other physicians like you will be able to do in another 20, 30, 50 years?
GRIFO: Well, currently, we're able to test in the embryo for certain specific genetic diseases, and these patients come to us because they have a child with a specific disease, such as cystic fibrosis, hemophilia, muscular dystrophy, Marfan Syndrome, there's a whole list of different disorders, and we're able to help these patients who have these children with devastating illnesses not have babies in the future with these illnesses. And that's an important point for them.
If you have a genetic risk, a 25 to 50 percent chance of having a baby with a serious illness and you're contemplating trying to have another child, that's a very difficult situation to put a couple in. And if they have this child that they're living with, there's a lot of guilt and there's a lot of issues revolving around that. They want to have healthy children, and they should be allowed to do that, and we're trying to help them do that.
WOODRUFF: And decades from now, what more can you do for them?
GRIFO: Well, I think it's really overrated the fact that we'll be able to make designer babies. We don't understand or have the genes for intelligence, we don't have the genes for hair color and eye color, and if you understand the technology that we use, it will be technically very difficult to be able to alter or manipulate these genes to get a desired outcome. So, I think this discussion is a good discussion to have now, but I think we're many years away from being able to do those kinds of things that people fear about this technology.
SHAW: Arthur Caplan, potentially with this technology, could all genetic diseases be eliminated before a child is born?
ARTHUR CAPLAN, DIR., CENTER FOR BIOETHICS, UNIVERSITY OF PENNSYLVANIA: Well, I doubt that. There's always a certain number of mutations that take place in genes; we can't always anticipate that's going to happen. So, I don't think we can get rid of all genetic disease, but I think we can have a significant impact on improving the health of children. And as Dr. Grifo says, I think that's a great and worthy goal. Using genetic knowledge to avoid disability, to avoid premature death, I can't think of a more ethical or moral thing to do, and if we can alleviate as well some of the cost that these diseases bring to others, to society, I think that's a tremendous advancement.
The trick is, Bernard, you have to make sure we're not forcing this on anyone. We want to still let people choose. If they choose not to use these technologies, so be it. But those who want them, I think these advances are going to be wonderful and beneficial as long as they're made voluntary.
SHAW: But what happens if a couple cannot afford to pay for this technology? Are they condemned to bringing into the world a flawed child?
CAPLAN: Well, down the road I suspect there's going to be two kinds of problems. One is access to health care, and reproductive technology, sadly, is no different from other areas of health care. We don't have fair and good access for all, we still haven't cracked the nut of universal access to basic health care; that's a real problem for America.
I think you've got to try and guarantee, especially where children are concerned, that they're not saddled with disability, that they're not asked to compete in the marketplace with problems that could have been prevented or avoided, so the ethical obligation to do something there is especially strong.
Furthermore, if you look out there and look at the access issue, we have a big problem between us and the underdeveloped world. It's certainly the case that the Western world has plenty of genetic marvels in the wings. We still have children dying of diarrhea, of polio, of basic preventable diseases all around the rest of the world, and that gap is likely to grow in the years to come.
WOODRUFF: Dr. Grifo, is there anything parents would ask you to do at this point that you would not agree to do?
GRIFO: Oh, absolutely. One of the technologies we developed was the ability to select a specific gender for a patient going through in vitro fertilization. Now, we've used this in the past to avoid a child being born with an x-link disorder, such as hemophilia or muscular dystrophy, which affects males, whereas females are carriers. So, we can select for transfer a female embryo that's not likely to have the disease.
Now, a lot of people say, well, gee, I would like to have a boy or a girl, and we have decided that this is not the proper use of this technology. These technologies are very expensive, they're very time consuming, there is medical risk involved, and I view sex selection as a trivial use for this technology, and I have chosen not to do that, and most of my colleagues have chosen that as well. I think there will be some people who decide they want to choose that approach for this technology, and I don't believe that we should be doing that.
You know, to me, sex is not a genetic disease, and I won't select against it. I will select against the genetic disease that will have serious consequences for the child. So, that's an area where we've had an ethical dilemma, and I think we've handled it quite responsibly.
WOODRUFF: Can you already anticipate now in the years to come other advances that will be made, things you'll be able to do but that you won't want to do?
GRIFO: Well, I can envision lots of different scenarios, but right now, our research is focused on preventing very serious genetic illnesses, and that right now is a full-time job, and that keeps us busy enough. And so we haven't been distracted by these more trivial uses of this technology. And I don't -- like I said, I don't think we have the genes for hair color, eye color and intelligence and are able to enhance those in an embryo, and so I'm not really that worried about this.
But I think this dialogue needs to occur, and I think we need to be responsible, and I think physicians like myself need to have these discussions, and we have for many years quietly, secretly -- I don't think the public really realizes that we've done this very, very thoughtfully. The Society of Assisted Reproductive Technology has put out many articles discussing these issues so that our membership, us providers, act responsibly with these privilege that we are given as physicians.
WOODRUFF: All right, we will take a quick -- short break now. When we come back, we'll continue our discussions with Dr. Grifo and Mr. Caplan, and we'll talk about whether there should be any limits on what doctors do.
We'll be right back.
ANNOUNCER: Some genetic testing centers off DNA tests for up to 40 of the most common inherited disorders.
ANNOUNCER: In 1989, a research team in London first demonstrated that genetic disorders can be treated in human in vitro fertilized embryos.
SHAW: More now of our discussion about the 21st century baby making and the choices and challenges it presents.
WOODRUFF: Our guests in New York are Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania, and Dr. Jamie Grifo, director of the Division of Reproductive Endocrinology at the Mt. Sinai New York University Medical Center.
Dr. Grifo, should there be limits placed by government on what doctors are able to do for parents, for families?
GRIFO: Well, this is an excellent question: You know, who should regulate this technology and who should make these decisions? And my personal view is that these decisions really need to be made in the office with the patients and the doctors that a bureaucrat in Washington who doesn't have a child with a serious illness does not really understand what goes on in the office and what goes on between patients, and that's really where I think the regulation should occur.
Now, most -- many people believe we're not to be trusted, that we have a technology, we're going to misuse it. And I would argue that, for the most part, we've done a pretty good job with self-regulation. I think you're always going to have an outlier (ph), you're always going to have the outlaw, and, unfortunately, a bank robber is never caught until after the bank has been robbed, and that's what's happened in our field. But the few deviants that have done these things have been caught and are not doing what they shouldn't be doing. And I think this really is the most effective way to allow us to move technology forward to help patients in a responsible way and without burdens of bureaucratic stranglehold which keeps us from doing what we're trying to do in terms of helping patients.
SHAW: Gentlemen, Dr. Grifo spoke of a dialogue within the medical and the scientific community. Starting with you first, Arthur Caplan, what does science do, what do doctors do if a disease is eliminated from an embryo, a child is born, a different disease develops? Who is liable? Whom do the parents resort to having some kind of relief?
CAPLAN: Well, when we've had those situations occur already, they've gone to court, and what we found is that the law is ill- prepared to deal with situations in which someone says, I've tested your fetus, they're not going to get this disease, and either they get the disease anyway, they made an error, or another disease appears.
I don't want to stand up in praise of strangulation and setting back patient-doctor relationships, but I think a little more legislation, a little more guidance is in order here, and I'll just mention three areas. One of them is trying to make sure that when people are going to use these services, they have some sort of screen on the people who make eggs and sperm available. We've seen Internet sales, people coming up and saying I've got the eggs of models or the sperm of geniuses.
So it would be nice to have some sort of check and balance there. It would be nice to get into the issue you're raising, Bernard, to make sure that people understand they get the baby that they get and they are obligated to raise it; it's not a commodity, there's no release if you don't get the product you ordered. It would be wonderful if we could get that clarified in the law.
And I think we need a little bit of attention to whole area of privacy. Right now, with all this genetic knowledge exploding upon us, there is no national privacy statute. And so, if someone wants to find out about your embryo or find out about information that your child has because they have a genetic disease and use that against them later, in terms of insurance or employment, they can. That ought to be fixed.
SHAW: Dr. Grifo.
GRIFO: Well, unfortunately, I think -- and perhaps the medical profession has abused this -- we've acted in a God-like manner, and I think that's a big travesty. We're not God-like, we're human beings just like the rest of us and things happen and we don't have a full understanding of everything; errors happen and, unfortunately, we're held to a perfect standard, and that's a shame.
The way we get around it is we give informed consent, we do the best we can to try and avoid errors and misdiagnoses, but the fact is we're not perfect, and I think people need to understand that; and it's unfortunate that that has to be decided in court. I mean, these are the realities. I think we have to be very responsible and educate our patients, but no technology is perfect.
SHAW: What do you mean when you say, quote, "we've acted in a God-like manner"?
GRIFO: Well, it wasn't that long ago that people never questioned physicians and we had all the power, and I think that was really irresponsible of us; and I don't think patients wanted to really know all the information. I think now we live in a different society, and thank God. I think people need to really be truly informed, patients need to educate themselves, we as physicians need to help educate them, there's other groups out there that help patients be educated so they understand all the benefits and risks of these procedures, and the imperfection in these procedures, so that we have a good understanding, so when things happen nobody feels like they've been duped.
CAPLAN: If I could just add here, I think that two recent examples come to mind where, if you will, God-like power has been put into play, and I think it's frightened the public; and, unfortunately, sadly frightened the public: The announcement of Dolly, the cloning of Dolly sort of out of the blue after there'd been a lot of discussion that cloning wasn't going to be something that scientists were interested in doing. Then, all of a sudden, we get the announcement that a sheep has been cloned, other animals being cloned. That scares the public.
If you add to that the response that we've seen to genetically modified foods where companies have said, you're eating the food and it's genetically changed and we don't have to discuss it, we don't have to get your consent; you're going to eat it and we're going to sell it. That's frightened the public too. I consider that abuse of scientific power.
What I think you've got to do there is make sure that you do what Dr. Grifo was talking about: educate the public in advance, let them understand the risks, let them see what's going to happen. There's nothing inherently uncontrollable about these technologies, but if they're foisted upon the public or pushed upon an unknowledgeable public, then there can be trouble.
WOODRUFF: All right, Dr. Caplan, Dr. Jamie Grifo, we're going to take a very short break. We'll be right back with more of our interview.
(COMMERCIAL BREAK) WOODRUFF: Back now with our interview with Dr. Arthur Caplan and Dr. Jamie Grifo.
Dr. Grifo, to you: How is what any sort of selection, whether it's genetic or surgical in the embryo, different from what Adolf Hitler did when it comes to wanting to make a better baby or a perfect baby, wanting to eliminate anything that's quote-unquote "wrong" or less than perfect?
GRIFO: Well, I think that's a very dangerous analogy. I mean, for -- it's important for children to be healthy. Everybody wants to have a healthy child. That's one thing. To select for specific characteristics that make a master race should not be confused with that. And I think if you don't make that distinction, then you really severely injury the patients who are out there who live with these genetic illness, who have children with these very serious, horrible diseases, and we want to help those patients not have to suffer those consequences and those children have those very miserable, difficult lives because of a genetic illness.
So I think it's a very dangerous analogy to make. And, yes, there is a slippery slope and a fine line, and we have to be aware of that, but to help someone have a healthy life should not be confused with trying to create the master race. Now...
WOODRUFF: Well, Arthur Caplan, how -- if you don't mind, let me go to Arthur Caplan: How do you distinguish between the two? At what point does trying to avoid some sort of birth defect or genetic defect become different from just making sure your child doesn't have brown hair or something?
CAPLAN: Well, I think it's a legitimate question, it's a tough question; I think the analogy doesn't hold for these three reasons: What the Nazis did was, first of all, coerced. There was no choice. They told people what they were going to do, and they told them in large numbers. Secondly, the Nazis acted upon racism. They eliminated groups. They weren't interested in the health of anybody who was Jewish or black or Slavic, they wanted them killed.
So they were interested in, if you will, genocide as a way to achieve some kind of crazed, public health eugenics goal. And probably the most important difference is no one is proposing murder and sterilization as the way to achieve these eugenic ends.
I don't think we're moving towards what the Nazis did when we talk about better babies, stronger babies, faster babies. What I think we have to think about is, are we going to make sure that this stays, if you will, accessible to those who want to choose to do it? How can we try and send out ethical messages that it's one thing to use a technology to make a healthier child, it's a different matter when you're trying to make the best child and impose your values about what perfection is on that baby.
We live in a world of choice; that, I think, is going to be our value guide to avoid abuses of the past. But if we lose that ability to let people choose, then I think we may be over the slope and down a road we don't want to go down.
SHAW: But based on what you just said, you cited the three facts that are reprehensible: people being dictated to, racism and the idea of murder. What about the impact of economic class? Could not economic class accomplish the three things that you just listed, that you said were taboo?
CAPLAN: Absolutely, Ken, and that is a much more -- I'm not worried that government in the United States or the United Kingdom, even the old Soviet Union, Russian republics are going to announce some day that everybody's going to make babies that are blue-eyed and blond haired. In the United States, the government can't even announce that we're going to fill potholes. Our future is to worry about economic disparity and what that's going to mean for access to genetics -- the benefits of genetics. That's where we really have to be attentive.
SHAW: But, Dr. Grifo, you said that Judy's analogy -- you said her analogy was dangerous, but you know and our viewers know, we all know that there are many people in the United States who hold that view, who have those analogies in their heads; and, also, politicians are persuaded by those analogies.
GRIFO: Oh, I agree with you completely, but I think that that's misguided. I don't think people really understand what it's like to raise a child with a serious genetic illness and how devastating that is for their lives. And the ability to prevent another child from being born with that particular problem is a tremendous benefit to those patients, and it's something that's been done way before we started doing pre-implantation diagnosis. It's been done with corionic villi sampling and amniocentesis, we're just doing it at a much earlier stage and avoiding having to terminate a pregnancy to solve these problems, which I think is an advantage.
But, you know, I don't think that this is eugenics. This is trying to help people have healthy children. It's not the same thing. And if you cast it as the same thing, then what happens is people will say: We shouldn't be doing that. So then we have to say to Mrs. so- and-so: Sorry, you have to have another child with that illness if you want to have another child; too bad, we can't use this technology on you. I think that would be a terrible situation to occur because of people not being able to discriminate between a good use of a technology and a misuse of a technology.
WOODRUFF: But aren't you saying that a child is -- who is born with or an adult who has one of these defects, whether, again, it's genetic or some other type birth defect, is someone who is practically a less contributing member of society because doctors and scientists are off in a corner trying to make sure that this kind of person doesn't happen again?
CAPLAN: Well, it's one thing to have no discrimination against people with disabilities or differences or illnesses; it's another thing to say that we're not going to allow technologies to move forward that can help repair or ameliorate those same problems. I'm all for making sure that we don't discriminate against anyone. I think that has to be a rock bed commitment in any society that's going to use genetic knowledge for medical purposes, but it's far different from saying we're going to not allow you to choose this option if that's what you want to do.
GRIFO: Well, it's interesting because, in a public forum, somebody who is for the American Disabilities Act made a public statement saying that I should be outlawed from doing what I'm doing because I'm discriminating against disabled embryos and I should go to jail for that according to the American for Disabilities Act. And I thought that that was a really horrible interpretation of what's being done.
We have patients who come to us with a problem, we explain the solutions to these patients, we give them the options. They have an option to have a child with a serious illness, they understand that. They come to us because they don't want to have a child with another serious illness, and I don't think there's anything wrong with informed consent. And you could read our 10-page document explaining this technique, explaining the risks and benefits and the pros and cons, and then have patients make an informed decision about what they want to do with their situation. I think that's responsible medicine, and I think that's what we should be doing as physicians.
WOODRUFF: Let me just ask you -- this is a tough question to put at the very end, but just to be clear about what we're talking about here: In all these instances, are we not talking about parents having the ability to end a pregnancy if they choose -- if the choice is made for them?
GRIFO: Well, that's the technology that was available before this technology. What used to happen is these patients would get to 16 weeks in their pregnancy and be told, sorry, we knew you had a 50 percent chance of having a serious illness in your child. Unfortunately, you have that. Now you have to make a decision: Do you want the child or do you want to terminate? Now, we're not doing that. We're doing it before the patients are pregnant. We're -- in the IVF lab, we're taking the embryos before transfer and putting back only the healthy ones and avoiding these patients getting into a situation where they have to terminate a pregnancy. I think that is a good thing to be doing.
WOODRUFF: All right, Dr. Grifo, Arthur Caplan, we thank you both very much for joining us, and we're going to have to leave it there. Thank you.
GRIFO: Thank you.
SHAW: That's it for our focus on designer babies. CNN's millennium coverage now turns to the world of athletic. "SPORTS TONIGHT" is up next after a brief commercial break.
WOODRUFF: And this programming note: You will be able to relive the first 24 hours of the millennium on a special edition of "NEWSSTAND." That's Tuesday at 10:00 p.m. Eastern, 7:00 Pacific; and 3:00 a.m. GMT Wednesday.
I'm Judy Woodruff at the CNN Center in Atlanta.
SHAW: And I'm Bernard Shaw. Thanks very, very much for joining us.
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