University Times

Genetic engineering is a science that tests the maxim, “Parents will do anything for their children.” Do parents want healthier and smarter kids? Yes. Do they condone, or should society condone, the manipulation of the genome to achieve that end? Well …

Six experts in various fields convened last month at Pitt’s law school for the symposium, “Designer Babies: The legal and ethical implications of permitting parents to selectively endow their children with particular genes in order to enhance their achievements in life.”

The speakers included Lee M. Silver, a Princeton University professor in the Department of Molecular Biology and the Woodrow Wilson School of Public and International Affairs, who gave the keynote presentation titled “The Science of Designer Babies.”

Leslie Bender, a professor of law in Syracuse University Law School, and Larry I. Palmer, endowed chair in urban health policy in the Department of Health Management and Systems Sciences, School of Public Health and Information at the University of Louisville, also reflected on the legal and ethical aspects of genetic manipulation.

Following the speakers, three panelists spoke briefly in response: David H. Perlmutter, a professor of pediatrics in Pitt’s School of Medicine and physician-in-chief and scientific director of the Children’s Hospital of Pittsburgh; Alan Meisel, Dickie, McCamey and Chilcote Professor of Bioethics, professor of law and director of the Center for Bioethics and Health Law at Pitt, and Alex John London, an associate professor in the philosophy department and Center for the Advancement of Applied Ethics and Political Philosophy at Carnegie Mellon University.

The event was moderated by Lawrence A. Frolik, Pitt professor of law.

Following are summaries of some of the ideas posited by the six speakers during the three-hour symposium.

*** Lee Silver, molecular biology professor

“What we’re talking about now, specifically ‘parental enhancement,’ is very different from 100 years ago with efforts at racial purification, which I think our society would agree is not a good idea,” said Silver, who authored a book on genetic engineering a decade ago.

“We’re really talking about technology that allows parents to give their children genetic enhancements to make their children better.”

Advancements in the technology are becoming reality at a frightening pace, he said.

“Biologists are very conservative. When I wrote ‘Reaching Eden’ 10 years ago, I was being optimistic when I speculated that the human genome would be mapped by 2020. Actually, it happened in 2003.”

Since that time, in animal experiments, scientists have succeeded in doubling the size of a mouse’s cerebral cortex by injecting a single gene; turning naturally promiscuous animals into completely faithful mates with a single ‘monogamous’ gene, and repairing the severed spinal cords of rats with tissue created by manipulating stem cells.

“So the charge that stem cell research theorists are overstating or exaggerating the potential I don’t think is the case,” he said. “It’s just a question of time. You even can take stem cells and make eggs and sperm. From a male cell you can get an egg. You can’t get sperm from a female’s cells because you need the Y chromosome, but you can take cells from two males and make an embryo.”

Even more amazing, he said, “is that scientists right now are actually just beginning to succeed in building living things from scratch by taking molecules, putting them together in a test tube and creating life in that test tube.”

There are two kinds of biology — descriptive and manipulative — that are necessary to know in order to be able to change genes in a way specific to a child, Silver said.

“In terms of descriptive biology, there’s the generic genome. We’re 99.9 percent the same; we differ in only tiny ways. The genome is like a digital book; it’s static.”

So scientists can correlate genetic profiles with interpersonal differences. “You can look at people who differ in some physiological way and look at the components of the genome difference: Take a whole bunch of short people and a whole bunch of tall people and you’ll find some small differences,” he said. “You also can make this correlation without real understanding of how genes, say, influence mathematical acuity, which has a high genetic component. You take a distribution of people who have math acuity and they have this particular constellation of genes and are missing this one in common.”

There are three basic biology manipulation techniques: controlled synthesis of component molecules; control over embryo cell growth and differentiation, and genetic engineering technology, Silver said.

He acknowledged that public opinion is conflicted about expanding animal experiments to human beings. For all the potential good, there are real, fundamental objections to the kinds of genetic manipulation that could lead to enhancements, he said.

“People will say, ‘It’s wrong to go against nature.’ But every time you prevent illness or postpone death with the use of medicine, such as vaccines, you go against nature. In ‘Frankenstein,’ there is the theme that you shouldn’t cheat death, because that is God’s [province]; you’re going against God. And there’s the very real concern that genetic enhancements are contrary to social justice by favoring one child over another,” Silver said.

In Western countries, he said, every inch in a male’s height equals $6,000 more in average salary, up to about 6' 10'' when the man is considered freakish. “That’s a fact. So there’s a very real advantage to being tall if you’re a male. Is that fair or unfair? Should parents want that enhancement for their male children to make their lives more likely to be better?”

In a 1997 poll, parents were asked this question: “If you had to choose one of the following four answers, who should have the power to control the use of genes?”

“God” won in a landslide with 70 percent of the answers; “no one” came in second at 16 percent; “parents” drew 11 percent, and “doctors” scored only 3 percent.

But when the same parents were asked: “If you were expecting a child, would you like to control the genes so you could take action that would prevent disease?” 84 percent said yes.

“I think most thoughtful people are thoroughly confused or conflicted,” Silver said. “I don’t have an answer for who should control genes and the technology, or how you decide who can use it and for what.”

No genetic manipulation technique will ever be 100 percent reliable, he acknowledged. “But if I could prove to you that I could lower the risk of birth defects to 2 percent, that is, to make it a lot safer than old fashioned sexual intercourse, which has a 4 percent risk of birth defects, if you are a Utilitarian or a consequentialist, you’d say to me: ‘You have to use genetic engineering technology because it’s safer.’ This shows you the problem of how ethical arguments are liable to arise in the future,” he said.

“It is incorrect or imprecise to say there’s nothing to consider because this is not possible, it’s not been done before. The reason it’s not been done is not because of science. We’re doing this in animals, and it will work in humans.”

*** Leslie Bender, law professor

“My concern is about culture and politics, and I will tell you I’ve changed my mind over time,” Bender said. “The more I read about what one author calls the ‘grim technologies’ — genetics, robotics, intelligent machines and nanotechnology — the more I was hooked. Science can more than double the life span of rats, and can make a blind man see by inserting implants into his visual cortex.”

With nanotechnology, scientists can put healthy cells into a person’s blood stream to repair damaged cells.

“These are miracles that are already happening. Under the law of exponential growth, accelerating change in technology is already old news in the laboratory.

“But, I think Dr. Silver is being too sanguine, too accepting of the inevitable, too willing to just let it all happen. I need to tell people we have to have a conversation about this.”

Among the broad cultural, political and ethical questions are: If scientists use genetic engineering, are they playing God? Would there be an even more divided class society? Would there be a black market for genetic materials? Will there be pandering to competitive aggression and corporate greed? Is the public good overridden by private profit? Will there be puppet masters enslaving populations?

“I may not know the science, but I’m familiar with the ethics,” Bender said. “We’re talking about changing human nature. People may not be smart enough to do that, and maybe not kind enough. We could be damaging ourselves and damaging posterity. And, anyway, we’re not genetic machines.”

So, she said, one camp in the discussion is shouting: “Enough! This is reckless science. These technologies are merely improved means to unimproved ends. Let’s stop what we’re doing and take stock of what’s going on. Put the brakes on.”

But gradually Bender came over to the other camp — beginning to see the benefits and believing that to outlaw the technology is not a solution either.

“So I worry about all that. By nature I’m a worrier,” Bender said. “While I’m worrying about all this, I might think differently if there was a genetic improvement of this worrying problem available. Some people don’t have this problem of worrying, and their lives are qualitatively better. At least I could prevent my grandchildren or great-grandchildren from inheriting it. Before, I would just have to accept it and move on. So it depends on one’s perspective.”

Bender noted that scientists had made progress in animal studies with improving memory, another appealing consequence of genetic engineering.

“I’ve read where scientists are working to genetically engineer us so that we can eat whatever we want and not get fat. Sign me up, I’ll be first guinea pig,” she joked.

“And if I want it for me, why wouldn’t I want it for my children?” she asked. Society has already accepted vaccines for disease, drug treatments for depression, medicines for allergies and other external modifications of the human condition.

“Why should gene therapy and enhancements be any different?”

An even more provocative question, she said, is: “Why do we assume that we’re in the true depths of nature that we were intended to be? Isn’t it human nature to try to make ourselves better?

“So I’m in a constant debate with myself. I seem to agree with everybody. I agree it can be a wonderful thing or an evil thing. We can’t stop the science, but we can talk about its uses, its consequences, its relationship to human dignity and human nature. So, given that, we need public dialogue no matter what we do in genetics. It’s not science or research that we need to fear. We need to be afraid of our social, political and economic institutions.”

*** Larry I. Palmer, urban health policy professor

When society examines the legal issues of genetic engineering, it should not neglect the nature of communities that are shaped by their own values, Palmer said. The key legal issue is not respect for a citizen’s autonomy, but respect for differences, including racial, social, cultural and religious differences found in communities, he said.

The overall legal issue has three components, Palmer said.

The first is the way family is defined in the law. “We need a definition that takes into account the varieties of how families are formed,” he said. Second, there needs to be respect for differences in communities and, third, the law needs to consider justice and its relation to children.

Much of the legal debate on genetic engineering has centered on individual rights vs. the potential for harming children, Palmer said. “If you look at diseases that affect certain ethnic groups, your current legal options are to avoid having children, or choose a partner of a different ethnicity to lower the risk factors, or abortion.”

To throw genetic engineering into that mix is something the law is not yet prepared to handle, he said.

“The President’s Council on Bioethics says to avoid eugenics (selective breeding). That’s seen as the slippery slope,” he said. “I am going to speculate there’s another type of slippery slope we have to worry about and that’s the destruction of the social fabric that supports the growth of our ‘one out of many’ [democratic] principle.”

To that end Palmer suggested his own definition of family: one or more adults engaged in the raising of a child. That definition also is child-centered, he said, and expands to include families that are not necessarily related biologically. The law has a role to play: to seek a child’s best interests and to preserve the meaning of community.

Enhancements are in the eye of the beholder, Palmer said, and they undermine the dignity of differences. “We are a society of many voices. We need respect for those differences. This is the politics of identity. But many of our different views should not be enacted into law [across the board].”

Who is qualified to make health law that could apply equally to suburban neighborhoods and urban communities, or to different races or religions? he asked. Will public policy actually exaggerate health care access disparities as genetics changes the ways in which medical treatments are developed and delivered?

“Instead, we need to look at the number of children at risk we’re already ignoring,” Palmer said. “In the 21st century we need to reformulate the law to have respect for differences, religion and the politics of identity.”

****

David Perlmutter, pediatrics professor

“I think it’s safe to say bioethicists have a future with all these challenges. Science is advancing so rapidly it’s challenging long-held philosophies,” Perlmutter said.

“As a physician, I find it ironic when you’re talking about a subject that puts fear into people, when it is in many ways the perfect solution to some of the issues regarding terminating a pregnancy. We spend so much energy talking about the ethics of terminating a pregnancy, and now we wouldn’t have to terminate.

“On the other hand, those of us who have fears about terminating a pregnancy probably also have fears about this technology.”

Perlmutter’s biggest fear is the potential for a small number of people to abuse what amounts to enormous power.

“But I want to raise three issues: one of implementation, one of genetic knowledge and one of advising and decision-making,” he said.

Regarding implementation of policy, Perlmutter drew on his experience as a pediatrician who has had to tell parents about the risks of certain treatments for their children.

“When we see how deeply the emotional responses are and witness the behavior of parents, it is remarkable to see how much more fearful parents are for what might happen to their children than for themselves. Such emotional responses affect their cognition, and that will be an essential component in the implementation of all this.”

Regarding implementation of gene therapy, Perlmutter predicted such therapies will be for a limited number of diseases, at least initially. “Our knowledge of diseases is way behind the knowledge of genes,” he pointed out. “We do need to ensure low risk for trying any of these therapies.”

Regarding the issue of genetic information, a little knowledge can be a dangerous thing, he said.

“What do we do with that knowledge? If people know their own genome, what are their responses to that, when a diagnosis can be made on a DNA basis?” he asked.

“There are even more subtle things concerning the ethics of decision making when there’s a genetic indication for a disease that might not occur for 30 or 40 years. What happens in the interim to the person who knows that?”

Or take the case of a disease such as hemochromotosis. “That is a very common genetic disease that basically is an iron overload in the liver,” he said. “Many have the genotype, but don’t get the disease. Probably only 10 percent with the gene get to having clinical problems. Are we going to have to inform parents if it might cause a problem 10 percent of the time? And how do we advise parents? This needs to be part of this discussion.”

Perlmutter had one recommendation to soften the divisive nature of the issues. “This discourse might go better if it were described not necessarily as genetic engineering, but as genetic medicine. It might lessen the fears and the emotional responses.”

*****

Alan Meisel, bioethics and law professor

“We can enhance human beings, we know that. We are already doing it, and we have been for years,” Meisel said.

This includes enhancements achieved through medical means, such as prenatal testing, organ transplantation, genetic diagnosis and selection of egg and sperm donors, and non-medical means, including choice of mate and determining children’s futures in a variety of ways, such as by choice of schools, religious training and parental example, he said.

“The question is should we allow it to be done? You might ask, and reasonably so, if the genetic engineering that Dr. Silver envisioned is a different order of magnitude than these kinds of things, then, if so, did that warrant a different response to the ones we’ve had for these examples?”

Before addressing that, Meisel said, society has to deal with the distinctions between enhancement, and cures or treatment for disease, “which I do not think is at all clear.

“For example, if we could enhance IQ, is that an enhancement or a cure? Most people would think it’s enhancement. But if a child would be born with the potential of only developing an IQ level of 50 and we could raise that to 70 or 80 or 90, many might be inclined to say that’s a cure as well as an enhancement.”

A similar example is increasing stature: Is that a treatment of a condition or an enhancement? “It may depend on the baseline,” he said. “If we’re talking about somebody who’s going to be significantly below average in height, adding height could be considered a cure.”

Since the pursuit of knowledge is not a genie that can be returned to the bottle, genetic engineering is here to stay and it will intensify, Meisel said.

“I doubt we can stop it without a massive curtailment of the freedoms we are accustomed to,” he said. “We also need to confront the problem that if it’s not done here it will be done somewhere else,” which could put the United States at a competitive disadvantage.

“Most importantly, we most certainly need to develop standards and procedures for reviewing, guiding, approving and overseeing this kind of research, and not let it grow under the radar the way some other medical technology has in this country, such as reproductive technology, which is essentially unregulated by the government,” Meisel said. “If we’re looking for guidance from law-making authorities, I suspect the guidance we’ll get is prohibition, which as I suggested won’t work, and might even be counterproductive.”

Instead, he said, society should look to organizations such as the National Academy of Sciences, which has issued guidelines for stem cell research, upon which research institutions, including Pitt, are modeling their policies.

“I would urge that we begin to have a public dialogue, and then mobilize the institutions in society, such as the National Academy of Sciences, that are capable of moving this forward,” he said.

*****

Alex London, philosophy professor

“I know of one famous philosopher who was put to death for disorienting the public,” London said. “I’m glad to see the biologists are joining us as targets of criticism,” he quipped.

“I’d like to start with a quote from ‘Gravity’s Rainbow’: ‘If you can get them to ask the wrong questions then you don’t have to be afraid of the answers.’”

He asked the audience to assume that they approved of the basic concept of allowing genetic enhancements.

“There are a number of banal issues that lie between where we want to go and how we get there: How do we get there without imposing unreasonable risks [on] human subjects? What kind of risks do we allow to test for enhancements where the goal is to get people thinking faster or having a longer memory or, my favorite, having a neck so long you can just keep eating and eating and never gain a pound? So a risks and benefits calculation needs to be done.”

More importantly, he said, how can society ensure a realistic and public debate over these issues?

“First, take the term ‘gene therapy.’ We hear a lot of wonders about what medicine can do, how it’s supposed to be fantastic. But gene therapy implies that it’s actually a thing that helps you and that’s a scam until we know that’s true. I’m not saying the promise of gene therapy will never be fleshed out. But for a fair debate, we might instead call it: the process of using genes in order to give therapeutic outcomes — but a long, long way off,” London said.

“Why designer babies is a topic that’s so titillating is because the responsibility for these issues falls upon scientists and they are playing tactical games.

“I want to stop and say, ‘Let’s think about that.’ It’s actually easier to think about those things than issues that implicate us in our individual lives and decision-making, like whether or not you’re willing to give up a greater share of your income to help some of the 40 million uninsured people in our country; and what about using medical technology that is not fantastical and future-oriented but that is actually here right now with health implications that are very meaningful.”

People have proposed the thought that new technology automatically gives society new questions that philosophy is not ready for, he said. “I think that’s exactly wrong. These issues raise the same old questions: What are our aims? Where are we going? Who do we want to be? And in the process what is the effect on others? How do we view people — as ends in themselves or as instruments to help us be able to eat more without having to pay the price for it?”

Are the so-called benefits really beneficial? “Some examples: You can have a better memory. Well, don’t forget about the importance of being able to forget,” he said. “I can give you the strength of a chimp. Is this technology only going to help us do things that we can do already?”

Aside from those objections, London said there is a broader set of social issues that are most important.

“My worry is that the motives that drive us to enhance or design the traits of our children are a recipe for a mediocre society, because we’re going to be trying to create the kind of children we think other people are going to like and reward and who will be able to succeed.”

The most important question, he said, is: “Are we creating a society whose basic social structures indicate that people who are different in a variety of ways can succeed and allow their difference to contribute to our democracy, so that diversity can be a strength of community, or are we going to go down the path of trying to engineer ourselves to look like the image of something that we might not even like?

“I understand issues of regulation and legislation. But because liberty is so important, we should not punt to lawyers and policy-makers because the main issues are really choices that ultimately are our responsibility.

“Are you creating a child that’s going to be confronting a future with whatever skills that they have, or are you creating a child in the image of Michael Jordan and then saying, ‘Now go be like Mike’?”

—Peter Hart