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Interview by Agnieszka Tennant

Brave New Laws

A conversation with bioethics lawyer Lori Andrews.

Since she passed her bar exam on July 25, 1978, the day the first test-tube baby was born, Lori B. Andrews has been a pioneer working at the juncture of medicine and law. By the time the National Law Journal named her as one of the hundred most influential lawyers in America, Andrews had become an internationally acclaimed authority on biotechnologies.

She regularly advises the institutions that are trying to come to terms with the consequences of the biotech revolution—the National Institutes of Health, the U.S. Department of Health and Human Services, the Centers for Disease Control, and the Institute of Medicine of the National Academy of Sciences, among others—and she chaired the Working Group on the Ethical, Legal, and Social Implications of the Human Genome Project. She recently served as a consultant to the science ministers of various countries on gene patents, embryonic stem cells, and DNA banking. Increasingly her counsel is sought by artists, who are taking the biotech toolkit from the laboratory to the studio.

Andrews's ability to translate scientific concepts into language understandable to ordinary people, her imaginative grasp of the potential consequences of biotechnologies, and her dry sense of humor make her a favorite of the popular media; she's appeared on The Oprah Show, Nightline, and many other programs. Distinguished professor of law at Chicago-Kent College of Law, director of the Institute for Science, Law, and Technology in Chicago, and senior scholar at the Center for Clinical Medical Ethics at the University of Chicago, Andrews is also the author of nine books, including most recently Body Bazaar: The Market for Human Tissue in the Biotechnology Age (Crown, 2001), written with Dorothy Nelkin, and Future Perfect: Confronting Decisions about Genetics (Columbia Univ. Press, 2001). In September, Agnieszka Tennant talked with her about the extraordinary promises and perils of biotechnology.

What compelled you to work on establishing legal limits to genetic technologies?

I've been very interested in the effect of medical technology on individuals since college. Scientists often get wrapped up in what a new technology can do in the abstract, without looking at the fact that technologies can change people's lives in a profound way—and sometimes not for the better. So I've been very interested in putting a human face on technology and seeing ways in which even some things with a potentially beneficial medical impact can cause social and psychological problems for people.

What makes you cautious about the multifaceted salvation that genetics is said to offer?

For many people genetic tests create more problems than benefits because of a therapeutic gap. Many of the diseases that can be diagnosed through genetic testing cannot be successfully treated at this time. That has enormous implications: Health-care insurers might refuse to grant insurance to people because their genes predict that they're at a higher likelihood of getting cancer. Or an employer may decide to not give a job to persons with children who might use more health insurance because of their genetic makeup.

Increasingly, people are being judged based on their genes rather than on their abilities. In what for me was a very traumatic case, a South Carolina court actually ordered genetic testing on a woman in a divorce case at the request of her ex-husband. The ex-husband wanted to see if she had a genetic mutation that would make her die at an earlier age, perhaps around age 50. If this case were to set a precedent, genetic testing could become routine in custody battles; a child might end up with the parent who has the predicted longest life span rather than the better parent. You can see how in the future, fundamental parts of our lives might erroneously be governed by genetics.

How widespread are these types of genetic discrimination today?

It's hard to monitor because some people who are turned down for a job don't realize that the employers secretly tested them for genetic mutations. In one survey, 30 percent of employers admitted to collecting genetic information about their employees. More than 20 percent of people with family members with genetic diseases say they have had problems getting insured as a result of that, even when they were healthy themselves. So I think we're just in the first stages of genetic discrimination. In the future we might see nursing homes wanting to do genetic tests related to Alzheimer's disease in order to turn away potential residents who might become harder or more expensive to manage.

Right now the Department of Defense keeps DNA from every soldier so that if bodies are found, they can be identified through DNA matches. But will this giant DNA bank be accessed to find out which soldiers have a genetic propensity to early heart disease so that maybe you would not promote that person to be a general? Will these samples be analyzed to see who has the controversial "gay gene"?

Who are the most common exploiters of genetic information?

A variety of social institutions that want to predict health-care costs of future behaviors have an interest in people's genetic makeup. So, genetic testing has been undertaken by insurers, employers, schools. In the future it might be undertaken by your mortgage broker or, as I mentioned, a nursing home. The question is whether social institutions should have the power to require people to find out their genetic makeup. We're a culture that generally has always thought that more information is better. And yet sometimes genetic information is toxic knowledge—you can't assume that everybody wants to know their genetic makeup. I've worked very hard in other areas of medicine to provide more and more information to people so they can make informed judgments, but genetic knowledge is different. It often turns out to be harmful.

What about our genes are we better off not knowing?

With Huntington's disease, a neurological disorder that is untreatable and that is usually fatal by age 50, only 15 percent of the people at risk actually decide to get tested. They'd rather live with hope than know that they're going to die young of an untreatable disease. That causes a problem if the court requires genetic testing in a custody case or if an insurer requires it. I know of at least one medical school that did not want to admit a student who was at risk of Huntington's disease because of the concern that the money would be spent training a doctor who would die young.

If people learn they have the genetic mutation predisposing them for Alzheimer's disease, they may erroneously think they're getting the disease earlier than they actually are. Imagine if you're told you have a mutation for Alzheimer's disease; every time you forget your car keys, you would think the disease is manifesting.

This will become an even bigger problem as we start to do more behavioral genetics testing. There are reports that certain researchers have found genes predisposing to aggression. One study suggested that infants be tested and their mothers be told so they could monitor their children to see if they actually were more aggressive. But these things can become a self-fulfilling prophecy. If you tell mothers that their children might have an aggression gene, will the mother raise the child differently? If the child gets upset and hits a friend, will the mother think that this child is going to become a criminal? In a different scenario, parents might withhold emotional or financial support from a child who has a genetic mutation that might cause that child to die at a younger than average age. That's why, increasingly, we're seeing medical organizations saying that parents should not be able to get genetic information about their children unless it's relevant to their children's health before age 18.

You've often compared the task of developing policy in the field of genetics to writing science fiction. Why is that?

We're at an unprecedented juncture in making policy. We're the generation that will decide what the human race is going to look like in the generations to come. Will we live among cloned human beings? Will we watch sports played by genetically enhanced athletes?I think it's important to ask what the world will look like in the future if a particular set of technologies is chosen or a particular set of laws versus another.

For example, if some parents are going to choose to genetically enhance their children by putting genes in embryos to make children taller or smarter, then we may turn into a population of genetic "haves" and "have nots," and the inequalities we see in society will be magnified. Already biologist Lee Silver of Princeton has suggested we could turn into two completely different species—the poorer people who cannot afford genetic enhancements won't even be able to have children with the people who have been genetically enhanced. I think rather than sitting back as we go through incremental steps to fundamentally change the human race, we should decide whether technology should serve human values or whether humans should be just remade to fit technology. There are scientific articles suggesting, for example, that we clone people who were born without legs so that the clones can serve as astronauts.

Scientists have proposed putting the photosynthesis genes in human embryos so that people wouldn't have to eat. I asked my students when the human rights would click in. What if you had half plant genes or half animal genes? One of my students, who is a lawyer and a doctor, said, "If it walks like a man, quacks like a man, and photosynthesizes like a man, it's a man." The boundaries of what's human are changing. I believe that we are capable of making moral judgments about whether those changes are appropriate or not.

So how much success have you had in getting legislators to imagine these things?

Lawmakers have finally begun to focus on this area, often making references to science fiction. Our president wondered if we were moving toward a brave new world. The House of Representatives recently passed a ban on cloning human beings, admitting that they were humbled by the task of having to imagine the future in this situation and that they weren't in the least prepared for the human cloning debate.

A growing number of states have passed laws banning genetic discrimination in insurance. Most of those laws fall short, however, because a federal law is necessary to reach the vast majority of companies that self-insure their employees. That cannot be done as a state measure. I am now constantly being called by staff people in the Senate and Congress wanting to address issues such as germline therapy and genetic engineering. They ask if parents should be able to give traits to children that children never had before, such as the running speed of a cheetah.

In part what we are struggling with is a deficiency in the very nature of law itself. Law looks backward. When we had the first cases that involved airplanes, courts looked to earlier cases involving horses and buggies. When we had the first cases about computer programs, courts looked to earlier cases about books. But medicine looks forward. If you were to put a lawyer from 100 years ago in a modern courtroom, he would be completely at home. But if you put a doctor from 100 years ago in an in vitro fertilization clinic, he would know less of what was going on than passersby on the street. It's very hard to create policy at the intersection of a forward-looking discipline with a backward-looking discipline. We are facing questions where there are no precedents. It is demeaning at some level to use precedents created for other purposes to deal with something as important as human life at every stage.

We don't have any social accord about the moral and legal status of the embryo. In infertility cases, there are now about 180,000 frozen embryos, about 20,000 of which are the subjects of dispute. In divorce cases, when courts in different parts of the country consider the same case, some are saying the human embryo is property, and some are saying the human embryo is a person.

I happen today to be working on draft language for an international treaty with George Annas from Boston University. One of the things that has struck us as we're working on it is that it doesn't seem right that a particular individual, nation, or corporation should be seen as having the moral or legal warrant to engage in a technology that profoundly alters the species. I am a big supporter of individual choice, but genetics is an area where individual choices have profound social implications. If 10 percent of the population decides to make their children a lot smarter than the others, it's hard for the rest of us not to follow suit. So, these things should not be decided by a biotech company or even a particular country.

What people and groups have collaborated with you?

In just the past few months an exciting collaboration is emerging among people who traditionally have been so divided on the issue of abortion that they have not been able to work together to create policy. I am heartened to see that prolife and prochoice groups that traditionally only focused on the abortion issue are beginning to join together. If we put aside the abortion issue, we can come to an agreement about the regulation of a variety of other important things, like human cloning, germline therapy, genetic engineering, gene patents, and genetic discrimination. Many arguments about human dignity and the future of human values can be made both in religious and secular terms. We're just starting how to find out how to do that.

What interest groups tend to resist regulation of genetic technologies?

The biotech companies, of course, of which there are over 1,800, have put up barriers to laws that protect people's genetic privacy. They want to have access to people's genetic information and their DNA without people's knowledge or consent for research purposes. Another stumbling block is that many people who have been discriminated against don't want to testify in favor of protection, risking that their employers and insurers will find out about their conditions.

In Body Bazaar, you contend that our bodies have become gold mines. What do you mean by that?

Body tissue has long been used as a source of information to diagnose health-care problems, but now human blood and body tissue are also the raw material for commercial products. They are valuable. For example, human eggs can be worth tens of thousands of dollars. A human gene can be worth hundreds of millions of dollars. One gene that the biotech company Amgen owns is worth $1.5 billion a year because of a treatment that can be made out of it. Consequently, patients have become treasure troves whose bodies have been exploited without their knowledge or consent by scientists and biotech companies.

I am amazed at the many uses of human body tissue, on top of transplant procedures. Human foreskin is used to grow artificial skin to treat burn patients. Stunningly, DNA can potentially be used to run computers, since its replications can provide memory. Artists have begun to sculpt in blood, and interior decorators buy human skulls in body boutiques to decorate people's apartments. Every body tissue has a price tag now.

How is this new market influencing genetics research?

I've seen some heartbreaking examples. Rather than sharing the tissue samples of research subjects, universities that are doing research on a particular genetic disease will hoard them so that their researchers will be the first to discover the gene and be able to patent it. I don't think most people realize that there was a profound change in law in the 1980s, when Congress said that university and government medical researchers who use taxpayer funds in their research can patent their findings and can enter into joint ventures with biotech companies.

What are some of the most perceptive commentators outside the United States saying about these issues?

I think internationally there is more of an attempt to look at these issues as human rights issues, not just scientific progress issues, and to suggest that people have a right to be born with an unmodified genome. In other parts of the world, you see less of a tendency to uncritically embrace every new technology. In Italy, various towns have formed an association of "slow cities," holding themselves out as places that make judgments about what sort of technologies are appropriate. For example, some have banned fast-food establishments because they think that they interfere with family life. A member of the French Parliament suggested that maybe they would have to start having ethical labels on things like drugs, similar to the labels on clothing that say "not made by child workers." The ethical label would inform people that the drug had not been developed with a patented gene or by using embryonic tissue.

Some have suggested that the common denominator for all bioethical dilemmas, including the stem-cell debate, is defining personhood. Do you agree?

I think the common denominator is that we must determine what our relationship should be to technology. Perhaps I am more skeptical about the benefits of technology because science has failed to deliver on so many things that have been promised. I'm of the generation that heard scientists promise to cure cancer by 1979. In 1984, they said that within three years gene therapy would fix every health-care problem. And then fetal-tissue transplants were supposed to cure Parkinson's and other diseases. And so now when I'm pressured, even coerced, by scientists with the idea that embryonic stem cells are going to be the complete cure to any disease, I can ask whether we should run roughshod over the values of a lot of people for a cure that might not materialize. Perhaps it's time to shift the burden of proof to the scientists to show more about the potential benefit, more about how they're going to deal with individual and social risks, before allowing profoundly novel technologies to proceed.

Agnieszka Tennant is an assistant editor at Christianity Today magazine.

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