DON'T IT MAKE MY BROWN EYES BLUE: Ethics of Human Genetic Engineering

Saturday, April 29, 2000

We are in the midst of a revolution in medicine: human genetic engineering. Like earlier revolutions in health care, such as surgery with anesthesia or the use of antibiotics, genetic engineering has the potential to greatly advance the health and wellbeing of mankind. Yet unlike earlier innovations, human genetic engineering raises serious ethical questions. It may be one thing for an adult to undergo gene therapy to cure a disease, but what about modifying human embryos to prevent that disease? And if embryos can be altered to improve health, what about to improve intelligence or to select physical characteristics such as hair or eye color?

Recorded on Saturday, April 29, 2000

Peter Robinson: Welcome to "Uncommon Knowledge". I'm Peter Robinson.

Our show today: Human Genetic Engineering. Genetic engineering has been called the fourth major medical revolution.

Revolution number one took place in the middle of the 19th century. It was the discovery of germs. A British surgeon found that cholera was caused by germs in contaminated water. Sanitation systems followed. Clean water, less cholera.

Medical revolution number two, also in the 19th century, the discovery of anesthesia, which of course made possible painless surgery.

Medical revolution number three in the 20th century, the discovery of antibiotics and vaccines. Because of antibiotics, you no longer need to suffer from pneumonia. Because of vaccines, you no longer need to suffer from smallpox or measles.

This brings us to medical revolution number four, which is taking place right now: human genetic engineering. Here we have some human DNA sequence. This is the kind of thing the scientists are studying. As they learn more and more about the genetic makeup of humans, they'll be able to use the information to combat diseases, but also, for purposes that raises questions.

It's one thing to use gene therapy to cure a disorder. It's another to use it on an embryo to make sure the baby grows up blonde or blue-eyed.

With us today, three guests. Michael J. Werner is director of federal government relations for BIO, the Biotechnology Industry Organization.

Hank Greely is a professor of law at Stanford University.

And Raymond Dennehy is a professor of philosophy at the University of San Francisco.

Medical revolution number four, human genetic engineering. Could this be the revolution we don't want?

Stop That Gene!

In a recent article one of the pioneers of genetic engineering, Dr. French Anderson, warned that genetic engineering could be used to practice eugenics on a vast scale. He wrote: our only protection is to accept clear stopping points, close quote.

Do you agree or disagree with that premise that it is very important to establish stopping points? Michael?

Michael J. Werner: I would agree with position, absolutely.

Peter Robinson: Okay, Hank.

Hank Greely: I agree with it, but I think each generation will find its own stopping points. Ours may not be our children's.

Peter Robinson: Ray.

Raymond Dennehy: I agree, and I agree a bit with Hank, I think it'll be an irresistible temptation to go for the designer product you can get.

Peter Robinson: Your position for our generation is, yes, we need stopping points. Everybody says that, right? Okay. Now, gentlemen, let's try to establish some stopping points.

Who gets the information? We know that DNA can convey all kinds of information about life expectancy, susceptibility to certain diseases, and so forth.

Question number one, insurance companies. Insurance companies are in the business of dividing people into different pools, according to risk, so that they can charge them appropriately for the medical coverage that they are likely to need. Should insurance companies have access to DNA code, genetic information, of Americans, Hank?

Hank Greely: Only to the same extent that they have got access to other medical information about us. Genetic information, I think, for these purposes, really isn't any different from other medical information. It's something that helps the insurance company predict future costs and future risks.

Peter Robinson: Now, to the same extent that they have access to other medical information, means what? What extent do they have?

Hank Greely: It depends. Personally I think we should move to a system where what's called medical underwriting is abolished; where insurance companies aren't able to decide who to insure and who not to insure, based on their health status.

Right now we do allow, in some contexts, medical underwriting. The genetic issues of medical underwriting seem to me no different from the nongenetic issues. Why should we worry more that a health insurer might reject someone with a genetic risk for breast cancer, when we allow a health insurer to reject someone with a history of breast cancer?

Peter Robinson: Ray.

Raymond Dennehy: I would express a misgiving, Hank, and that is, it's like saying, you have a history in your family of alcoholism, and maybe one is predisposed, but one is not an alcoholic until one displays the behavior that we associate with alcoholism, you know, drinking too much.

One has a history of breast cancer, this person actually had breast cancer.

But the DNA information doesn't guarantee that you will get breast cancer.

Peter Robinson: In some cases, suppose we take Huntington's Disease, there is certain--we are at the point now where there is a relatively large issue, according to my reading about half a dozen diseases, you look at the genetic code, if you see certain things in the genetic code, that person will get that disease.

And the number of diseases that fall into that category, that is, large probability, will only increase as we continue the human genome project.

Peter Robinson: Mike.

Michael J. Werner: See, I think a critical point here as well is that it is vitally important for research on genetics to go forward. And one of the--if we're going to try to cure disease and relieve the suffering of the thousands, hundreds of thousands of people who have many of these illnesses, we need to keep going forward with the research.

And what would concern me is that if people felt that their insurance company, for example, could get access to that kind of information and then use it against them, we're not going to--that's going to potentially put a damper on the research, and ultimately kind of slow us down.

This kind of information should be used for good things, to cure disease, to relieve suffering. It should not be used to hurt people.

Peter Robinson: Keep it out of the hands of insurance companies, then.

Michael J. Werner: That's what I would say.

Peter Robinson: Let's turn to genetic engineering proper, and continue our search for stopping points.

Don't It Make My Brown Eyes Blue

We now have a company already working on a salve to restore hair that is lost as a result of chemotherapy, and the point here is that the salve uses genetic material. Any objection to that? Any objection? No objection? All right, that's easy.

Now let me tell you that what the company really has in mind is the market of millions and millions of men who are losing hair naturally. So for these people it's not actually a medical condition, but a naturally-occurring condition, and the company's salve and follicle stimulant, and so forth, all developed genetically, will one day, the company hopes, be put on the market for these millions of men; any objection to that? Any objection?

All right, we have now established that we can use genetic information, genetic developments for medical and cosmetic purposes. We continue down the ladder. What about hair color? If blondes have more fun, do you mind using genetic information to produce blondes?

Hank Greely: I would have serious concerns about using genetic material in a egg, in a sperm, in an embryo, or in a fetus, to produce a blond child. I would not have any particular objection to a salve containing DNA that was rubbed into the hair to lighten the hair color.

Peter Robinson: What about skin color?

A grown person uses genetic therapy effectively to change his race? Should that be prohibited?

Michael J. Werner: Prohibited, as in legally prohibited?

Peter Robinson: Yep.

Michael J. Werner: I don't think so.

Hank Greely: I wouldn't say, prohibited in any way, in part because race is a meaningless social construct anyhow.

Peter Robinson: A meaningless social construct? All right.

Raymond Dennehy: Michael Jackson has made a career out of changing his race.

Peter Robinson: So that doesn't bother you?

Raymond Dennehy: Not in principle. But here's the practical problem. For purposes of identification, race becomes important. You see, in other words, are you Caucasian, African-American, are you--and I think there could be--

Peter Robinson: Yeah, sure, people could then start to game the affirmative action system presumably. All right. But let's leave it on--you're the trained philosopher at this table, so let's leave it on the level of principle.

So we now have people who are allowed to use genetic material to change their race, effectively. What about to change their level of intelligence? Athletic prowess? Aggressiveness? Real fundamental character traits?

Raymond Dennehy: Well, that all depends. We do that already with regard to steroids, and we do it with over-the-counter, you know, ginseng, and everything, and so people want to do that.

Peter Robinson: No objection in principle?

Raymond Dennehy: Well, here's the ethical problem, if you're going into personality changes, as a consequence of that, I think that is really a serious ethical question.

Peter Robinson: We are, we're going into personality changes, that's definitely where we're going.

Hank Greely: Peter, have some more coffee.

Peter Robinson: Okay.

Hank Greely: A substance that will have effects on your personality. Now whether it is the caffeine in the coffee, or whether it's DNA, I don't think makes a difference. The question is, should we allow or not allow those kinds of changes; not, should we allow them using caffeine, and not allow them using DNA.

That's again, getting back to my earlier point, that genes aren't that different.

Michael J. Werner: And getting back to something I was trying to raise earlier, is, even if we feel uncomfortable, or even if, at a certain point in your hypotheticals, we get to something that all of us say, okay, that should be prohibited--

Peter Robinson: I'm trying very hard to find that place.

Hank Greely: --even if we get there, that doesn't mean that the science should be prohibited, and the technology to develop--that needs to be developed, should be prohibited. Arguably, you could prohibit some uses, but I think there is so much potential good with this kind of technology that it needs to go forward.

Peter Robinson: You let the research go forward?

Hank Greely: For the most part, although there is some sort of research that we shouldn't allow.

Peter Robinson: What?

Hank Greely: Research that harms humans without having a sufficiently good possibility. Research that creates humans for the purpose, the sole purpose, of research.

Raymond Dennehy: See, there's another problem. Who defines what is harm? I mean, I think that's a very important conception.

Hank Greely: And who defines what's a person?

Raymond Dennehy: Oh, yeah, that's a big issue.

Peter Robinson: If we tape a show on American defense, or China policy, or Russia policy, I do not have people say, well, now wait a minute, we have to address a very deep philosophical question, namely, identity, personhood.

But we do a show on bioethics, and boom, 15 minutes into it, people are saying, wait a minute, we have to address, what is a person? What is harm?

This is an unusual field in public policy, right?

Raymond Dennehy: Uncommon, but not unknown. In other words, we kill with words before we kill in deed. In other words, when the Supreme Court in the Dred Scott decision wanted to uphold slavery, all of a sudden blacks became three-fifths of a person. We do this all the time.

Peter Robinson: No problem using gene therapy on adults? All right, what about using it to alter the traits of unborn babies?

Genes R Us

It appears pretty clear that in the next 30 years or so, maybe sooner than that, we will be able to design babies, that is to say, you'll be able to choose the sex, eye color, hair color, an awful lot about the personality--aggressiveness, cheerfulness, optimism, so on and so forth, using the fruit of genetic research.

Should that be permitted, Hank?

Now you're a great man for saying the genetic stuff is no different from all kinds of other things that we have in society, so I would put to you, the parents who sacrificed to send their toddler to a Montessori School to get the IQ up, what's difference about using genetic research?

I have twisted around and bit you with your argument.

Hank Greely: No, no, I was getting prepared to bite you with it, but you bit first; a preemptive bite.

Peter Robinson: A preemptive bite.

Hank Greely: Well, first, I want to argue a little bit with the premise of your question. I don't think it's that clear that either we're going to be able to add genes to an embryo to make a difference, or that the results will be that predictable, that things like Huntington's Disease are relatively unusual, where a gene automatically leads to a result.

Something like athletic ability, maybe the gene means you've got a--one version of the gene gives you a 15 percent chance of being a good athlete versus a 10 percent chance.

So I think those issues make your premise a little bit suspect, we don't know yet.

Ultimately, if that were possible, and if it were proven to be safe and effective, which I think is a big if, I'd still be in favor of a moratorium on it at this point.

Peter Robinson: Why?

Raymond Dennehy: I think it would be a disaster. Number one--

Peter Robinson: --even if what the parents want is a beautiful child, an intelligent child--

Raymond Dennehy: And we all do. But see, the interesting thing of coital sex, before we took--in the contraceptive society, before we move procreation from the bedroom to the laboratory, and we separate--we all would want the best children, but we accept what we get, and we love it, warts and all.

Right now, in in vitro fertilization, it's about 40 percent effective . It costs about $8,000 a pop. The temptation is going to be irresistible, as I said, not to squander that money on average folks, on that effort, but rather to choose the most promising candidates for children.

Peter Robinson: But you're opposed to it because you're afraid of the creation of some kind of super class?

Raymond Dennehy: Right. Look, we were mentioning the clone Dolly--

Peter Robinson: Dolly the sheep.

Raymond Dennehy: The cry came up: clone Einstein. Why clone Einstein? Not because he was such a warm lovable character; because he's a brilliant physicist.

If that's your reason, then you want to clone a thousand of them. In other words, if one is good, a thousand is going to be better. Now you're into creating human beings as instruments.

So there--see in other words, this whole idea is a real assault on the dignity of a person. In other words, human beings are important as they are.

Peter Robinson: Michael.

Michael J. Werner: Well, I was going to say, cloning is a good example, in that it would clearly be unethical to clone a human being for the purpose of creating my twin.

Peter Robinson: Why? Why?

Michael J. Werner: The technology of cloning and the research that comes from that and the use of it has many other applications that are incredibly beneficial to science and to society.

So what we're really talking about is, obviously, line drawing. So at what point do we get to a point--

Peter Robinson: Yes, but you agreed. We need stopping points. We started the show off--this is what--

Michael J. Werner: Yes, and we've suggested that we have stopping points.

Peter Robinson: Okay, let's try again.

Hank Greely: We're opposed to, I think all three of us, are opposed, at least for now and the foreseeable future, to genetic manipulation to pick traits in newborns. To pick traits in babies.

Now Ray is opposed to it forever.

Raymond Dennehy: Absolutely.

Hank Greely: I'm opposed to it for now. I don't know how long Michael's opposition lasts.

The reason I differ from Ray is, I do think, again, going back to are genes different, that what you tried to hit me with is an argument that I think has a lot of merit. You manipulate and change your children by changing the environment, by not smoking and eating well during pregnancy, by, if you're Leopold Mozart, training your son, who has certain probably genetic predispositions to musical ability, to be a great musician from the age of three. If you are Earl Woods, it's by training your son, Tiger, to be the world's greatest golfer from the time he's three.

We affect our children through their environment, as well as through their genes. I'm not sure I see a deep principled difference between the two.

Raymond Dennehy: Well, you can only develop what one's potentials are. You see, if Mozart didn't have a genius, you could play the piano--and I've seen that, people can practice six hours a day, and if they're not musical, which you can't teach, they are going to take those two quarter notes together in Mozart, and go bump bump, and they're technically very good.

You can't teach creative writing to somebody who is not creative. You can teach them how to write, and they will be better.

Hank Greely: I'm not convinced, though, that you can draw a firm distinction between genetic and environmental influences, on this potential versus realization potential.

Raymond Dennehy: Well, I would disagree.

Peter Robinson: One more case study on using genetic technology in human reproduction.

Tempest in a Test Tube

A woman called Barbara Nasdorf, married at the age of 35--38, rather. She tries repeatedly to conceive, and ends up in one miscarriage after another. Fertility specialists suspected that the quality of her eggs was the problem.

So 21 eggs were harvested from her ovaries, 12 were fertilized with her husband's sperm. These 12 were then subjected to genetic tests. This is different, stuff that didn't exist before genetic research came along. Five were found...

Michael J. Werner: Excuse me, the genetic tests were for what purpose?

Peter Robinson: The quality or the viability of the eggs that had been implanted with the sperm.

Of the 12, five passed the test, and were implanted in her uterus, and two were born completely healthy. Good idea, Ray?

Raymond Dennehy: Against it.

Peter Robinson: Against it? Why?

Raymond Dennehy: I think once you make that kind of formal separation--

Peter Robinson: Between what and what?

Raymond Dennehy: Between sex and procreation, you've--see in other words the contraceptive society has separated sex from baby making. Now the technocrats separate baby making from sex. And the child has--see I would argue--this is a hard case, if a couple love each other--

Peter Robinson: It's politically a hard case, because there are you are trying to tell a woman holding two beautiful babies that what she did was wrong, right? That's a hard problem.

Raymond Dennehy: It is, believe me. But the issue is, nobody has a right to another human being. People have the right to try to create a human being, but human beings aren't objects. And human beings have a right to be created in an atmosphere of love and commitment. That's not going to happen except in these kinds of isolated cases.

Peter Robinson: So what is the danger? If this kind of practice becomes more widespread, what do we see happening?

Raymond Dennehy: You're going to start breeding for the designer babies. It's irresistible.

Michael J. Werner: See, I think that situation you just described is distinguishable from what I expressed some concern about where we were talking about changing the genetic makeup of the baby. Because to me this situation is a diagnostic test, like other measures are a test for fertility or something like that, so I don't have a problem with that.

Peter Robinson: But Michael, that diagnostic test was imposed on 12 fertilized eggs, and seven were found to fail, and those seven were destroyed.

Michael J. Werner: Well, then you get to the issue about life beginning at conception, I guess, and fertilization.

Peter Robinson: Does your industry try to get to that issue?

Michael J. Werner: Do we try to get to that issue?

Peter Robinson: Yes, yes. You represent 800 industries-- The case study that I just described, any objections in that at all?

Hank Greely: I don't have any problem with what happened. I do think it forces us though to try to maintain a difficult line. It forces me to try to justify the difficult line between health related traits and enhancement traits.

I wouldn't have any problem with two parents, both of whom are carriers of the cystic fibrosis gene, having--if they're going through in vitro fertilization anyway--having the fetuses, having the embryos tested, before implantation, to see whether they carry two copies of the cystic fibrosis gene, and thus, are very likely to get cystic fibrosis, and only implanting the ones that that will be healthy.

I would however have a problem with them choosing the blond embryo.

Peter Robinson: Okay, now, you said, if they were going through in vitro anyway. Gosh, if you're got two parents both of whom carry the cystic fibrosis gene, wouldn't that be a reason for conceiving in vitro?

Hank Greely: Possibly, although I think the old fashioned way of making babies has a lot going for it. It's cheap, it's easy, and it's often fun.

Peter Robinson: Yes, yes, yes. But that's not what we're doing the show about.

Hank Greely: But I think it's important, because I think some of the fears are based on the idea that everyone is going to have designer babies, designer babies are going to sweep the country. Because in vitro fertilization is such a difficult, expensive, time-consuming, unpleasant process--

Peter Robinson: Oh, but it is today.

Hank Greely: --and the alternative is so easy.

Peter Robinson: Ten years ago PCs were difficult, frustrating and cumbersome.

Genetic engineering, and the ethical questions it entails, are coming at us. Is the country responding as it should?

The Politics of Gene-ing

As far as I can tell, perusing the web, the sum total of the response of the American democracy to the kinds of questions that we've been asking today is as follows.

There are about 20 bills pending before Congress, and an eleven-member blue ribbon panel has been appointed to advise the secretary of Health and Human Services, Donna Shalala. Does that strike you as an adequate response to this sort of ethical problems that are coming our way?

Michael J. Werner: Well, it's also not the only response.

Peter Robinson: It's not?

Michael J. Werner: No. I mean I think that's the response at the federal level. There is a national advisory commission. There are members of Congress. There are regulators and the like.

But that doesn't include other levels of government as they ought to--sure, there's the FDA, a regulatory agency that focuses on these issues. And there's this national advisory ethics commission. There is something called the National Recombinant DNA Advisory Commission, which is part of the National Institutes of Health. Its mission is to discuss publicly the social and ethical implications of biotechnology.

Peter Robinson: Do you feel confident that things are moving along on the level of regulation and law-making as they should?

Raymond Dennehy: No, for one reason, right now, the way it stands, is that this affects federal funding, does it not, these advisory commissions? How much of a break does it put on private industry? How much of a break does it put on industries that move to foreign countries?

Just as the pharmaceutical companies will test drugs or use drugs on Third World women, where they couldn't use them in the United States because of regulatory restrictions.

Number two, I'm a little pessimistic too, because it's not just a matter of the practical problem, which can't be ignored, of majority rule. It's also the foundation of democracy, which is not based on majority rule. You know, there is this kind of moral premise about what human beings are. And it's very conceivable that human beings as a mass could vote in ways that were inimical to the dignity of the human person.

Peter Robinson: We hold these truths to be self-evident, and you would include in the self-evident truths maybe a couple that didn't occur to Jefferson to write down at that time, because there weren't issues like these, but--

Raymond Dennehy: Right to life. And as I say, we keep changing the rules on that. We even go so far as to say that human life begins at implantation now, not conception.

Hank Greely: Look, democracy is the worst form of government except for everything else that has been tried. In this policy area, like any other policy area, democracy is moving forward in ways that are two steps forward, one step back, that sometimes take wrong turns.

I think we need to keep pushing to ensure that our decisions are made on an educated basis; that when the popular voice is heard, it's a popular voice that is educated to some extent, that understands what the issues are.

But right now, I think that the making of policy in this field is probably ahead of the making of policy in most other areas that the government makes policy.

Peter Robinson: I'm sorry, we just--I have--I want to close it out with a prediction now. I quoted Dr. French Anderson at the beginning of the program. I quote him again.

His stopping point is as follows: We should not use human genetic engineering for any purpose other than the treatment of serious disease, no matter how tempting it might be.

Ten years from now, will we be using genetic engineering only for the treatment of serious disease, Michael?

Michael J. Werner: I think we will be using it for serious diseases, and it probably will be used for other things too.

Peter Robinson: Hank?

Hank Greely: Yes, in uses with embryos, fetuses, newborns; no, we'll use it more broadly in uses with adults.

Peter Robinson: Ray?

Raymond Dennehy: I think we will use it for commercial purposes. The old Romans had a saying, pecuniae non olet, money does not stink. And I think there is so much money to be made, commercializing--

Peter Robinson: That it is simply irresistible?

Raymond Dennehy: I think it's going to happen, yeah.

Peter Robinson: Ray, Hank, and Michael, thank you very much.

Human genetic engineering: as you saw, it turned out to be a lot easier to agree on the need for stopping points, than to agree on the stopping points themselves.

At least our guests agreed that we shouldn't clone human beings.

I'm Peter Robinson--no, I'm Peter Robinson--thanks for joining us.