Ethics of Manipulating Genes

A delicate balance

NOVA: Are you excited or disturbed by the implications of molecular medicine, or a little bit of both?

Kitcher: I'd have to say a little bit of both. And I think my attitude since writing The Lives to Come has been to worry more rather than less.

Why is that?

Really two reasons: First, some of the things that were pointed out as being necessary a decade ago are still not in place, and very many hard problems now await us. I think the political mood of the country is so against instituting the kinds of needed programs that it's likely that a large number of people will be hurt by this rather than benefited by it. The second thing is that it seems to me that more and more the private sector has entered this realm and is likely to develop scientific research in the direction of profits, which is not necessarily going to accord with what is good for people either in this country or more broadly around the world.

Where should we draw the line on the continuum between preventing suffering with gene therapy and improving upon nature with genetic enhancement? That is, once we start where do we stop?

I think there are some things we can do that clearly would improve the quality of life of certain people, and those are a very good idea. If we can do something successfully with gene therapy to avert progressive memory loss or keep people flexible longer, I don't see why we shouldn't do that. Nor, of course, do I see any reason why we shouldn't do what we can to combat diseases by means of gene therapy, if that becomes possible. I know it has its advocates, but at the moment it seems to me that except for really serious, debilitating conditions, it's inadvisable to try anything very ambitious with gene therapy, simply because it's so crude. It may become much more refined in future decades, but at the moment it's very crude.

Playing God

Well, if it does become refined, and we begin to abort lives that doctors or parents perceive as flawed, will we be playing God?

Look, I think the use of Tay-Sachs prenatal testing is a very merciful thing. I thoroughly approve of that. I think things become much more tricky when you talk about issues like cystic fibrosis, chances for heart disease in middle age, conditions like dwarfism, various kinds of blindness and deafness. There I think it's genuinely hard to figure out whether or not you should prevent a birth.

"It's horrendous to me to envisage a world in which we all have to try to conform to some rather narrow range of features."

What about, hypothetically speaking, if screening were to reveal genes that would predispose a person to, say, obesity or homosexuality or low I.Q.?

Well, we know that these are going to be probabilistic things. The case of same-sex preference, for example -- it's not going to be more than a 50 percent propensity. I think that's a desperately sad thing. Obesity comes with certain health risks, and the question then is whether things could be done to help the young child avoid the lack of health.

It's horrendous to me to envisage a world in which we all have to try to conform to some rather narrow range of features. When I wrote a review essay a few years ago for the London Review of Books, the editor gave it a really interesting title. The title was "Tall, Handsome, Straight, and Intelligent." You know, I think it would be dreadful confining human diversity to such very narrow ideals.

And yet who wouldn't want to be, say, tall, intelligent, and perfectly healthy who could be?

Why are we so concerned with tallness? Are we concerned with intelligence for its own sake, or are we concerned with intelligence as a means to getting ahead in life? If it's the latter, then of course what we want is children who are more intelligent than other people's children. I think there's nothing wrong with something if it were taking the following attitude: "I want this for my child, and I hope that every other child can have it, too." But the real worry is that there are conditions in which one wants to have the advantage over other people; one wants children who are smarter or more muscular than others rather than wanting intelligence or fit bodies for their own sake.

Ethical boundaries

Is it ethical to alter the genes of someone who hasn't been born yet and hasn't given his or her consent?

It's not technically possible.

I mean when and if it becomes so.

Consider the following possibility: There's a fetus, and we discover through genetic screening that there is an allele at a particular locus correlated with extreme problems. Let's say it's Huntington's disease long repeat, and we have some molecular scissors we could send in and cut that repeat down to size. I don't see any problem with snipping out little bits of genetic material to prevent somebody from developing Huntington's. There's absolutely nothing unethical about doing that. We can be very, very confident that this is something that the child would want, right?

Suppose that a pregnant woman were told that if she ate a certain substance—let's make it something really benign like bananas, which she would normally eat—there's a high risk that her child would develop some nasty condition. It seems to me perfectly ethical for her to abstain from eating bananas even though she might normally have made bananas part of her diet.

In both cases I think the underlying moral principle is the same: We are confident that the person-to-be would thank us for doing this.

What about when you get into something trickier, like altering eye color, if that ever became possible?

Eye color isn't tricky at all. If we can't find better things to do with biomedical technology than to modify people's eye color, then life will be very good indeed. If we ever get to that utopian state then we can worry about whether or not that's ethical. For the moment, we've got many, many urgent biomedical problems to deal with, and I think it would be frivolous to do that.

"People in other parts of the world are suffering terribly because of things that we could cure."

Just as I think it's frivolous to waste medical resources in the affluent world at the moment when there is so much preventable suffering and infectious disease of all kinds in the developing world. That's a theme I've gotten more and more interested in since I wrote the book—using the new genetic techniques on a more global scale. I think we ought to be looking much more at that.

A moral obligation

Will companies in this country that might be willing to consider this find profit enough to do it? This issue's come up recently regarding AIDS drugs, with some pharmaceutical companies lowering the prices of AIDS drugs in Africa....

Yes, thank God that they've been forced to do it. Look, there's a moral issue here. In the U.S. we have a vast, vast amount of the world's resources, and people in other parts of the world are suffering terribly because of things that we could cure. What's more, they're suffering from conditions that we could investigate using the techniques that are available to us.

It seems to me a very, very serious question whether we should be pouring as much money as we are into the molecular genetics of cancer when we could be sequencing the genomes of known pathogens and working very hard to develop vaccines that could possibly prevent diseases that kill millions and millions of children annually. Surely there are some serious moral issues here. We can certainly justify the expenditure of some funds on these molecular tools against cancer, but from the figures I've gotten so far the disproportion between what we do with respect to cancer and what we do with respect to diseases like malaria is extraordinary.

What might change our thinking on that, to, say, do more work on malaria?

I used to hope that people might be persuaded by moral arguments, issues of compassion. I'm not sure they will be. Then I used to think that people might be persuaded by prudential arguments, that they could come to recognize that the breakdown of health in developing countries is actually a potential threat to the First World (and I think it might be).

"I think molecular medicine is a cooperative venture that serves the interests of all humankind."

This is a point made by Laurie Garrett in her very fine and scary book, The Coming Plague. Her argument is that the world is now a very small place, infectious disease can travel very, very fast, and it is unduly confident for the affluent world to think that it can escape its scourge.

I would extend her point. I think we should think of ourselves as quite possibly lucky that for a period of time we've had to worry about things such as genetic diseases and conditions that strike people in middle age, lifestyle-induced conditions like greater risks for heart attacks and so forth. And we haven't had to worry about the major killers of the past: tuberculosis, plague, malaria, smallpox, etc.

Well, smallpox is dead. At least we hope smallpox has completely died out; we have no reason to believe that it hasn't. But many of the other diseases are waiting to jump from here to there, as AIDS makes clear to us. They may come back to haunt us in decades to come.

I think we should be much more concerned about infectious disease than we are, and I think we should be concerned about it primarily on moral grounds, that we have an obligation to do something for people in distant countries. But even if we are not morally sensitive to those people's needs, I think we should be worried about the future for ourselves.

A Private Matter

Something a lot of people are worried about is privacy. Should anyone own genetic information? Be able to patent it?

Well, when asked why he didn't patent the polio vaccine, Jonas Salk said, "You don't patent the sun." That's the way I feel about patenting. I think molecular medicine is a cooperative venture that serves the interests of all humankind. The idea that it is driven by local motives and profit and that that forces costs up and makes it impossible for people to get the drugs they need seems just wrong. It's inappropriate for medicine to enter this kind of free-market mentality.

I teach [the 18th-century philosopher and economist] Adam Smith in one of my core classes here at Columbia, and Smith, great free-marketer that he is, thinks that there are limits to the market. He thinks there are some things in which you don't want to have markets. He's quite clear on this. Well, I think medicine is a place you don't want to have a market. I don't want the things that are available to people all around the world to be determined by people that happen to have capital to invest and can make profits in this way more easily than in that way. That's just irrational and absurd.

Of course, it's been done forever with pharmaceuticals, right?

That's correct, but I think what we need to do is reverse the process of patenting rather than to have more of it. I know the slogan—"no patents, no cures." But there are surely other ways to develop incentive to come up with cures than simply holding out obscene monetary rewards, including holding out sizeable but not obscene monetary rewards.

What about personal privacy? Should doctors or the government or anyone else have access to one's genetic profile?

My inclination used to be to say it doesn't matter who has access to genetic information if there's nothing they're allowed to do with it. I mean, it's not that the genetic information per se is such an invasion of a person's privacy. If someone knows my DNA information, it's not as if they know the details of my relationships, my wife, my children, and all of that. It's not that sort of invasion, that sort of intimacy.

The problem is that people who know things about somebody else's DNA could use that to make all sorts of interventions in their lives that are not beneficial to them. So my thought became, well, you stop people using genetic information if they have to know it to discriminate.

I now think it would probably be advisable to supplement that with as much as you can do to put hedges around genetic information so that people can't get it, simply because if they can't get it they can't use it. So I am now in favor of a double-barreled attack on this: trying to keep the number of people who have access to genetic information about an individual to a minimum, and at the same time trying to put into place regulations and statutes that would prevent people from using the genetic knowledge they have of another person to act contrary to another person's rights; having laws against genetic discrimination in employment and insurance; and so on.

Avoiding Discrimination

How then can the layman best prepare for the coming era of molecular medicine? Any advice?

Campaign, for a start, for universal health care. I mean, the argument I gave in the book is still a completely valid argument. You may be one of the lucky ones, but roughly five percent of the population will be unlucky. Those people will either be uninsurable or only insurable at prohibitive costs. Once all of this starts to really get going, and insurance companies begin demanding information on you from this and that sort of genetic test, some people are going to find that they can't get the insurance they need.

Whenever I give talks on this I make this point, and invariably one or two people come up to me afterward and say, "I know somebody who..." and tells me a sad story about the system, about something like this that is happening already. People are finding that because of the genetic tests that they have been asked to take or that they actually have taken, their insurance is now over or changes drastically.

"The genetic lottery doesn't care whether you are a Republican or a Democrat."

Can you give an example of the kind of disease for which this kind of discrimination is occurring?

Well, in women with the alleles for breast cancer.

And their insurance changes because of that?

Yes. There are other scenarios, too. There was a couple who had a son who was diagnosed with Fragile X syndrome, and they managed to get some insurance for him that would cover various forms of medication and medical attention for him. But the insurance ran out when he was about five. There have been people for whom the same is true with cystic fibrosis. They've managed to get insurance at a very high cost with a cap on it. What that means is that they can intervene for a little while in their children's lives, and then they can't afford it anymore.

Down the road do you see genetic testing possibly engendering a new class system that distinguishes people based on their genes?

Well, I think it's possible. I think it will just work with the existing class system.

Rich versus poor?

Yes. But some people who are very rich—Republicans should be aware of this—will find that the genetic lottery has dealt them or their children or their grandchildren an especially poor hand, that they are vulnerable in a way that even their riches won't protect them against. The genetic lottery doesn't care whether you are a Republican or a Democrat, and it doesn't care whether you make $400,000 a year or $30,000.

A very long revolution

So are we seeing the start of a golden age of medicine or a potentially unethical and immoral venture?

We're in the middle of a very long revolution, which will produce lots of medical benefits at an irregular rate in the next century or two. Where they will come is, I think, hard to predict with any accuracy. The most immediate thing that will happen is the proliferation of genetic testing, and we are hideously unprepared for that.

If I had to predict what will happen, it will be something like this: Our cures and treatments will come at a relatively slow rate. There will be promises of cures, but it will be terribly difficult to work some of these things out. (Ironically, however—getting back to something I mentioned earlier—vaccines might be one place where we could make advances more quickly.) Anyway, cures for things like cancer or remedies for heart disease and so forth will come, but they will come irregularly and slowly.

While all this is happening, there will be an era of genetic testing, and people will be pitched into this era with inadequate genetic counseling. We'll have doctors who don't know enough about genetics and patients who are completely inadequately protected. So what will happen, I predict, within the next 20 years is that everybody will know somebody whose life has been changed for the worse because of a genetic test, and eventually, perhaps, this amazingly individualistic country will stagger towards the realization that it has to put some protections in place for people.