By Harold Henderson
Risa York had been trying to get pregnant for years. She had only one fallopian tube--the passageway through which a fertilized egg would normally travel into the uterus--and it was damaged. So she and her husband, Steven York, sought help from modern medical technology. Her egg and his sperm met up in a petri dish at a Norfolk, Virginia, clinic run by Howard Jones. Then the resulting embryo was inserted into her uterus in hopes that it would attach itself and develop normally. The procedure--in vitro fertilization, known in the trade as IVF--is difficult and expensive but no longer experimental. Louise Brown, the first person ever conceived outside a human body, was born in 1978. Now 15,000 IVF babies are born every year in the U.S.
After four unsuccessful tries, the Yorks decided to have the clinic freeze one of their embryos for a later attempt. That procedure too has become routine. Zoe Leyland, the first person frozen after conception, was born in 1984; in the U.S. 150,000 embryos are now on ice for possible future use.
When the Yorks moved to Los Angeles and asked to take their frozen embryo with them, Jones's clinic refused to give it up. An outraged Risa told her mother, "They're holding my baby hostage."
The Yorks soon decided they needed help from a lawyer. In November 1988 they called Chicago-Kent law professor Lori Andrews, who tells their story in her new memoir, The Clone Age: Adventures in the New World of Reproductive Technology. Andrews doesn't usually get involved in private litigation, but as a new mother she was touched by the Yorks' predicament and agreed to help without a fee. She translated Risa York's panic into a three-part legal brief. The couple, she argued, had a right to take their embryo because they'd signed a contract giving them "principal responsibility" for its disposition. Second, even if they hadn't signed a contract, they'd still have a property right to their own genetic material. And if all else failed, they still had a right to their embryo as part of their constitutional right to privacy in reproductive decisions.
The case looked strong. To make sure it would persuade a Virginia court, Andrews hooked up with Norfolk lawyer Jeremiah Denton. He made a suggestion that seemed to reflect Risa York's thinking. "The first maxim of trial lawyering," he said, "is that 'plaintiffs lose boring cases.' If this case is only about frozen cells belonging to a woman who could have lots of other frozen cells on ice somewhere, it doesn't have much sex appeal." So why not give the embryo a name?
Andrews didn't like this idea at all. In fact, she was horrified. "If we humanized the embryo too much," she writes, "the court might declare the embryo to be a person"--in which case they would win the battle for Embryo Y and lose the war for reproductive freedom. "The court might want to appoint a guardian, and the defendants [the clinic] might be able to assert a claim to the embryo on the grounds that they knew better than the parents what was in the embryo's best interest. Turning the embryo into a person with legal rights of its own would set a dangerous precedent. Women's abortion rights would be in jeopardy; abortion would be deemed murder."
Andrews had her way. The embryo continued as a nameless piece of disputed property, and the Yorks won their case anyway. They retrieved Embryo Y in its protective shipping container and boarded a plane for California. Before takeoff, Andrews writes,"They put the three-foot cylindrical dry shipper into the window seat, put a pillow around it, and clicked its seat belt."
Lori Andrews can tell a lot of hair-raising stories about reproductive technology. At first glance, the Yorks' doesn't seem to be one of them. Like the frozen-embryo divorce case involving Todd Ginestra, Margaret Hale, and Highland Park Hospital now making its way through the Cook County circuit court, the Yorks' problem didn't involve unheard-of moral dilemmas. Legally it was like a dispute over who owns a piece of lost luggage--newsworthy only because of what's inside.
Just what was inside the Yorks' luggage when they flew off to California? A baby, as Risa York said? Or a nameless bunch of cells, as Lori Andrews insisted? That imponderable question played a bit part in the Yorks' case. It has played a bigger part in other cases, as when Mario and Elsa Rios died in a plane crash in 1984. They left a pair of frozen embryos in Australia and an estate worth $8 million. Andrews sums up the ensuing legal conundrum in one crisp question: "Would the embryos inherit the estate, or would the estate inherit the embryos?"
Now that conception often takes place in the laboratory, questions like this will keep seizing center stage whether we like it or not. Genetic testing, for instance, can now detect whether your eight-celled embryo has cystic fibrosis, Down's syndrome, or other genetic conditions. Soon it will be possible to eliminate those conditions with "gene therapy," altering the crucial genes at the very beginning of life (or before, depending on your point of view). This seems like an unquestionably good thing to do, for the same reasons that we take our babies to be immunized and try to keep them from eating (too much) dirt. But then the trouble begins, because it's hard to draw a line between disease prevention and genetic enhancement. Is deafness a genetic defect? Some deaf activists prefer to have nonhearing children. Wouldn't your child be better off without a genetic propensity to breast cancer? Allergies? Alcoholism? Obesity? Shortness? Aggression? Forgetfulness?
As this technology develops, what Andrews calls "admission standards for birth" are only going to escalate. "What happens to our definition of normal after genetic enhancement hits the scene?" she asks in her book, and gets an answer from Michael Langan, a vice president of the National Organization for Rare Disorders. "There will be many wealthy people willing and eager to pay the price of making their child taller and more beautiful. Eventually there will be discrimination against those who look 'different' because their genes were not altered. The absence of ethical restraints means crooked noses and teeth, acne, or baldness will become the mark of Cain a century from now."
Princeton University biologist Lee Silver sees the same future eventually, but thinks the initial impact will be small. "Affluent parents will have children who are less prone to disease, and even more likely to succeed (on average) than they might have been otherwise," he writes in his 1997 book Remaking Eden: Cloning and Beyond in a Brave New World. "But with each generation, the fruits of selection will accumulate....It is impossible to predict the cumulative outcome of generation upon generation of embryo selection, but some things seem likely. The already-wide gap between the rich and the poor could grow even larger as well-off parents provide their children not only with the best education that money can buy, and the best overall environment that money can buy, but the 'best cumulative set of genes' as well."
Is this unfair? Should it be outlawed? Silver doesn't see how we could so restrict parental choices. "If it is within the rights of parents to spend $100,000 for an exclusive private school education, why is it not also within their rights to spend the same amount of money to make sure that a child inherits a particular set of their genes? Environment and genes stand side by side. Both contribute to a child's chances for achievement and success in life, although neither guarantees it. If we allow money to buy an advantage in one, the claim for stopping the other is hard to make, especially in a society that gives women the right to abort for any reason at all."
Ultimately, Silver speculates, the top 10 percent or so of humanity--the "gene-enriched" or "GenRich"--might well improve so much that they and the less affluent "Naturals" will become "entirely separate species with no ability to crossbreed, and with as much romantic interest in each other as a current human would have for a chimpanzee." There would no longer be any sense in which all people are created equal.
That part is still science fiction, but the technology is no further away now than a moon shot was in the 1940s. And of course people are already designing their own babies in less sophisticated but equally novel ways. The Genetics and IVF Institute in Fairfax, Virginia, can sort sperm to help parents produce a girl (93 percent success rate) or a boy (73 percent success rate). And the University of Illinois at Chicago maintains a sperm-donor Web site (www.uic.edu/com/mcsr/androlab/catalog.htm), one of many where prospective parents can pick a biological father by ethnicity, blood type, hair color, eye color, weight, height, years of college, and occupation. Egg donors are also readily available. In the August 9 New Yorker, Rebecca Mead profiled a 26-year-old Columbia law student who was supporting herself by "donating" a number of her eggs to an infertile couple for $5,000. Those shopping for human eggs or sperm can be quite demanding. Mead describes one doctor's meeting with a couple, the husband clad in Nebraska Cornhusker red, who insisted that their donor be on a varsity sports team. Others offered to pay the doctor extra for something better, "as if they were buying a puppy" or a zoning permit.
A lot of bioethics consists of agonizing over each novelty as it comes along. Should egg donors be paid? Should they be offered $50,000, as they were in one advertisement that ran in top university newspapers in February? Should parents be able to select for taller children? These questions may be important, but what's going on here isn't just one new technology or an excess of commercialism. The big picture is that we're increasingly able to reproduce as we choose, rather than simply accept the hand nature deals us. As Nature editorialized in 1996, "The growing power of molecular genetics confronts us with future prospects of being able to change the nature of our species." Silver thinks this is great. University of Chicago professor Leon Kass isn't so sure. In his 1997 essay "The Wisdom of Repugnance" he explains precisely why reproductive technology need not fall into evil hands to be a problem. "Thanks to our belief that all children should be wanted children, sooner or later only those children who fulfill our wants will be fully acceptable."
Either way it seems fair to ask, how can we make the right decisions and not slide into a mentality that's half shopping mall and half Hitler? "Excuse me, I'd like to return this baby--wrong eye color."
One answer would be to rely on the basic value that got us into this situation: individual freedom of choice. In Lisa Belkin's moving July 25 New York Times Magazine story on sex selection, she decides that her two sons are enough. She won't to go to the Genetics and IVF Institute to try for the baby girl she'd long dreamed of. "I try to picture Emma, but she fades. She has been fading a lot lately. No. I will not do this. I do not want it badly enough."
The basis of her decision isn't love, or God, or duty, or honor. The basis is individual choice--how badly she wants the child. That's a consumer decision, and normally making decisions on that basis causes no problem. Suppose I have $2,000 and you have a new computer system for sale. We strike a deal and make the trade. We're both better off, because I'm happier with the computer and you're happier with $2,000. And society is better off because the sum total of satisfaction is greater than it was before--as long as we've broken no laws and haven't harmed anyone else. We've each benefited by following our self-interest. The "invisible hand" has worked.
This model might seem to work fine with babies too. Suppose I have $40,000 and you have the reproductive technology I need to have a baby, and we make the trade. We both feel better off--I'd rather have the baby and you'd rather have the $40,000. "The vast majority of parents using IVF have gone away happy," writes libertarian journalist Ronald Bailey, making a case against government regulation of any reproductive technology in the August-September issue of Reason. "It is the same in any market: There are a few operators who defraud their clients or treat them negligently, but in the overwhelming majority of transactions, both parties benefit."
But in this case the economic model doesn't cover everything. Society may not be better off after this transaction. For one thing, we have to consider the baby--is it better off? For another, we have to consider whether this transaction, and many like it, will end up making today's class distinctions biologically permanent down the road.
Being able to have a baby even if your tubes are blocked or your sperm scarce seems like a good idea. But a society forever divided between the GenRich and the Naturals seems like a bad one. So why not draw a line between good reproductive technologies and bad ones, so that we can go on doing business as usual on the good side of the line? Because it isn't easy to do.
Andrews calls reproductive technology "the wild west of medicine." It got a wild start in the late 1970s, when the doctors who implanted the embryo that became Louise Brown were unable to get funding from the British Medical Research Council because they were implanting embryos in women at a time when no one had yet done any studies using IVF on primates. And it's still wild. Consider that today IVF doctors often implant more than one embryo in the woman, because not all embryos make it--and because it helps inflate their success rate and makes insurance reimbursement more likely. Of course it also makes for more multiple births, which are more dangerous for babies and mothers and more expensive all around. And consider that the IVF technique of "intracytoplasmic sperm injection" (ICSI) has recently become popular, used to create tens of thousands of babies--though now research has begun to show that ICSI babies are more likely than others to have abnormal chromosomes. Charles Strom of the Illinois Masonic Medical Center--no friend of government regulation--says that ICSI "went from impossible to first description to worldwide use in about a year. It should have been done under a research protocol, with approval by an institutional review board and informed consent."
As in the real wild west, the law hasn't kept up with the expanding territory. California toddler Jaycee Buzzanca, born in April 1995, started off with five "parents"--her genetic mother (an anonymous egg donor), her genetic father (an anonymous sperm donor), the surrogate mother who carried her, and John and Luanne Buzzanca, the couple who set the whole process in motion. Caught in the middle of John and Luanne's divorce, Jaycee was declared legally parentless by one judge, and she remained so until an appellate court ruled that intent is what makes you a parent these days, at least in California: "Jaycee never would have been born had not Luanne and John both agreed to have a fertilized egg implanted in a surrogate," said the court. It then begged lawmakers to make some rules. "No matter what one thinks of [reproductive technology]...courts are still going to be faced with the problem of determining lawful parentage. A child cannot be ignored."
"There is something wrong," says Eugene Pergament of Northwestern University Medical School, "when Illinois has licenses for barbers and beauticians but none for the very creation of life." To be sure, there are plenty of reasons that even this safety line hasn't been drawn, leaving reproductive technologists to follow the customers' wishes. Reproductive technologies such as embryo freezing are neither "drugs" nor "devices," so they fall outside the purview of the U.S. Food and Drug Administration. Moreover, much reproductive technology work takes place in private clinics, which get no federal money and aren't subject to the regulations that govern its use. Since normal medical practice in the field is often ill defined and always changing, it's difficult to prove malpractice if something goes wrong. And when insurance doesn't cover the use of reproductive technology, private-sector regulations and limitations don't apply either.
But these reasons don't explain enough. There are always obstacles to new regulation. Why in this case is there so little will to overcome them? The answer may go back to the ambivalence about the status of Embryo Y and Andrews's reluctance to give it a name.
The very fabric of American life in 1999 depends on separating sex from reproduction. That means we ensure reproductive freedom and reproductive privacy, including a woman's right to abortion on demand. Such rights wouldn't be incompatible with regulation--except that there's a strong minority that believes human life begins at conception, and there's a muddled majority that at least partly accepts this view. Almost any move to regulate reproductive technology runs the risk of being hijacked by pro-lifers, who see themselves as protecting vulnerable human beings. "The religious right would welcome any regulation on any genetic technology," says Strom. "Look what they did to the March of Dimes--scared them away from supporting genetic research."
That's why Andrews was willing to risk losing the Yorks' case rather than even hint in court that their embryo might be what Risa York called it--"my baby." Rules that would protect frozen embryos in private clinics (as opposed to rules guaranteeing parental control of the embryos) might be construed as regulation to protect human beings. And that would cast a cloud on the current generation's freedom to reproduce (or not) at will. "The assisted-reproduction industry caters to the wishes of adults, and their wishes consistently trump the interests of children," wrote George Annas, chairman of Boston University's health law department, in the September 24, 1998, issue of the New England Journal of Medicine. "The abortion model of private decision making has been used to resist the regulation of assisted reproduction."
Because the right to reproductive freedom is official but not secure, people who would otherwise insist that reproductive technology meet high and uniform standards of safety and efficacy prefer to leave it alone. The resulting stalemate is rich in irony. The feminists, liberals, and lawyers who support a woman's right to choose have no problem slapping regulations on smokers, gun owners, SUV enthusiasts, and anyone else who fails to conform to their idea of the good life. For their part, pro-lifers stand ready to slap regulations on sexually active teens, unmarried couples, gays, and anyone else who fails to conform to their idea of the good life. Neither group is especially libertarian, but between them they've created a zone of freedom of which they both disapprove (in different ways), where more than 300 privately funded clinics do billions of dollars in business helping their anxious customers create life with a minimum of outside restraints. The clinics' continued existence naturally builds a constituency with strong feelings. One client, Stephen Galati, now father of triplets, wrote in the June 17 issue of the on-line magazine IntellectualCapital.com, "Any governmental intervention in the baby-making process would impede our rights as Americans and would violate our democratic principles." Social scientist Dorothy Wertz told Andrews, "Autonomy just runs rampant over any other ethical principle in this country."
Andrews has done her part to maintain that zone of freedom. When Illinois legislators reacted to Louise Brown's birth by passing a vague law to discourage IVF, she teamed up with Lois Lipton of the ACLU to challenge the law on reproductive-rights grounds. Andrews once advised scientists on the legal rights of a severed head frozen for possible future transplantation onto a healthy body and counseled a panicky IVF doctor who feared he might commit incest if he implanted a couple's embryo in the husband's sister. But when Scottish scientists cloned Dolly the sheep (on the 277th try) three years ago, that was too much. She repented. In a 113-page report to the National Bioethics Advisory Commission, she urged that human cloning be not merely regulated, but banned outright.
"I had helped make reproductive technologists invincible, and facing human cloning was like greeting Frankenstein's monster for the first time," she writes. "The creation had gone amok. I needed to draw the line here to atone....Cloning seemed to be the perfect opportunity to shift the burden of proof, to ask scientists to give a good reason rather than a false promise before they began the technique, to show why it was really necessary, and to design a system from the start to protect the participants." Cloning, she concluded, is so different from other reproductive technologies that banning it wouldn't endanger a woman's right to reproductive choice. It would be the perfect place to draw the line.
Most books about reproductive technology are thinly disguised sermons. Refreshingly, in The Clone Age Andrews instead tells how she changed her mind. (She has endured some insults as a result. She says Lee Silver told her, "You used to be so smart.") But can she draw the line where she wants to?
Is cloning so radically different from IVF, surrogate motherhood, sperm and egg donation, sex selection, and all the rest? Obviously it is different, since it involves genetic material from only one person, not two. But it's not nearly as weird as popular mythology has it. Genetically it's a lot like twinning--your clone wouldn't be you any more than two identical twins are the same person, nor would your clone grow up as your exact duplicate. "What if we did clone Saddam Hussein?" asks Strom. "Big deal. He'd probably become a rabbi." Strom recalls the sci-fi classic The Boys From Brazil, in which Josef Mengele's attempt to clone dozens of baby Hitlers fails because genes aren't destiny. "Cloning is not the end of the world as we know it."
Andrews nevertheless offers two arguments that cloning is so different from assisted reproduction that we can ban cloning without endangering any of our other rights. First, she says, cloning gives the parent too much power over the offspring, denying the child what has been called "the right to an open future."
True, the "parent"--or is it the "twin"?--of the first human clone will be one of the most controlling parents in history. But is the cloner's power so different from that wielded by couples who visit the IVF and Genetics Institute in order to have a girl or a boy? Or those who surf the Web for the perfect sperm donor? Is a child chosen to be like me worse off than a child chosen to be like Mike--or a child conceived with the aim of providing a matching donor for a relative, as at least 100 have been? Cloning is just one more step in the transformation of children from unpredictable events to designer goods. If cloning is bad because it gives parents too much power, then so is any other choice-enhancing reproductive technology. "Power" is just the flip side of "choice."
Second, according to Andrews, techniques like IVF and surrogate motherhood "meet existing needs," while newer ones like cloning and posthumous reproduction (in which dead men's sperm are recovered for IVF) "create needs and try to shoehorn them into the existing category of women's reproductive choice." But the distinction between meeting existing needs and creating new ones lies entirely in the eye of the beholder. In generations past, couples who couldn't have children were the victims of mysterious fate. Now IVF has enabled women with blocked fallopian tubes like Risa York to have a genetically related baby. Cloning, among other things, would enable a couple with no eggs and no sperm to have a genetically related baby. What's the difference? If cloning is bad because it creates a need by making the heretofore impossible possible, then IVF is bad too. The quest for unfettered free choice that led us to embrace IVF will undoubtedly lead us to embrace cloning as well.
Twenty years ago I sat in a rural downstate church and watched our minister nearly break down and cry in the pulpit. He and his wife loved children and had long wanted their own, but they were still childless. He said that if it was God's will for them not to have any, they wouldn't fight it.
Trying to have children was always about putting yourself in the hands of fate. You had little choice about what you got--or about whether you got anything at all. And if you had no child, eventually you had to come to terms with that fact. If you had one who was quite different from your expectations, you still loved it and cared for it and brought it up.
In the years since I heard that sermon, this arrangement has begun to change. God's will, or fate, is ever so gradually being replaced by human technology and human choices. Our minister and his wife could have a kid today (if they had the money), they could choose its sex, and more. It doesn't take much imagination to see a future time when having a child will be more like ordering a sweater from Land's End than participating in a mysterious and uncertain process of creation. Aubrey Milunsky's popular medical book on genetics and reproductive technology is titled Choices Not Chances, and he has no doubt that having more choices is a good thing.
But if you get the wrong color sweater you can send it back. What if you get the wrong kid? What if the reproductive technologists make a mistake and use the wrong sperm donor, and you get curly red hair instead of black straight hair? Or a boy instead of a girl? Or a five-foot violinist instead of a seven-foot basketball player? Or black skin instead of white (this has actually happened)? If this were the result of fate you would have to accept it. But a mistake in a process for which you've paid good money may seem to call for a different response. Either way, there's a new baby in the world, and as the Buzzanca court said, a child, unlike a sweater, cannot be ignored.
Clearly our right to individual choice must end where it starts inflicting harm on someone else--in this case, on that erroneous baby. To draw a line, we have to do what Andrews resisted doing for Embryo Y--consider what will be good for the child. We have to ask whether our treasured desire for free choice is harming the next generation. And if we decide we don't like the idea of children being treated like sweaters or the idea of a society ultimately divided into GenRich and Naturals, then we'll have to give up the freedom to make some choices. Fate is no longer available to save us from such tradeoffs.
Art accompanying story in printed newspaper (not available in this archive): illustration/Russ Ando/photo/Jim Newberry.