Twenty years ago, the bookstore in which I was working closed for a few hours while we all went to the funeral of one of our colleagues. Herbie was a delightful guy, well liked by everyone. He died in his 20s--a ripe old age back then for someone with cystic fibrosis. In keeping with the family's wishes, we all contributed money in his memory to support research on the disease. In those days, the best hope was that scientists would develop a prenatal test that would identify fetuses likely to have C.F., allowing them to be aborted. The thought made us uncomfortable. "Would you really want Herbie never to be?" said my boss.
But science has a way of surprising us. Two decades later, abortion is no longer the answer proposed for cystic fibrosis. Gene therapy--the kind of audacious high-tech tool that generates countless references to Brave New World and Frankenstein--promises not to stamp out future Herbies but to cure them.
This spring I thought of Herbie for the first time in years. It was amid the brouhaha over cloning, as bioethicists galore were popping up on TV to demand that scientists justify their unnatural activities and Pat Buchanan was declaring that "mankind's got to control science, not the other way around."
It wasn't the technophobic fulminations of the anti-cloning pundits that brought back Herbie's memory, however. It was a letter from my husband's college roommate and his wife. Their 16-month-old son had been diagnosed with cystic fibrosis. He was doing fine now, they wrote, and they were optimistic about the progress of research on the disease.
There are no Herbies on Crossfire, and no babies with deadly diseases. There are only nature and technology, science and society, "ethics" and ambition. Our public debate about biotechnology is loud and impassioned but, most of all, abstract. Cowed by an intellectual culture that treats progress as a myth, widespread choice as an indulgence, and science as the source of atom bombs, even biotech's defenders rarely state their case in stark, personal terms. Its opponents, meanwhile, act as though medical advances are an evil, thrust upon us by scheming scientists. Hence Buchanan talks of "science" as distinct from "mankind" and ubiquitous Boston University bioethicist George Annas declares, "I want to put the burden of proof on scientists to show us why society needs this before society permits them to go ahead and [do] it."
That isn't, however, how medical science works. True, there are research biologists studying life for its own sake. But the advances that get bioethicists exercised spring not from pure science but from consumer demand: "Society" may not ask for them, but individual people do.
Living in a center of medical research, I am always struck by the people who appear on the local news, having just undergone this or that unprecedented medical procedure. They are all so ordinary, so down-to-earth. They are almost always middle-class, traditional families, people with big medical problems that require unusual solutions. They are not the Faustian, hedonistic yuppies you'd imagine from the way the pundits talk.
And it is the ambitions of such ordinary people, with yearnings as old as humanity--for children, for health, for a long and healthy life for their loved ones--of which the experts so profoundly disapprove. As we race toward what Greg Benford aptly calls "the biological century," we will hear plenty of warnings that we should not play God or fool Mother Nature. (See "Biology: 2001," November 1995.) We will hear the natural equated with the good, and fatalism lauded as maturity. That is a sentiment about which both green romantics and pious conservatives agree. And it deserves far more scrutiny than it usually gets.
Nobody wants to stand around and point a finger at this woman [who had a baby at 63] and say, `You're immoral.' But generalize the practice and ask yourself, What does it really mean that we won't accept the life cycle or life course?" Leon Kass, the neocons' favorite bioethicist, told The New York Times. "That's one of the big problems of the contemporary scene. You've got all kinds of people who make a living and support themselves but who psychologically are not grown up. We have a culture of functional immaturity."
It sounds so profound, so wise, to denounce "functional immaturity" and set oneself up as a grown-up in a society of brats. But what exactly does it mean in this context? Kass can't possibly think that 63-year-olds will start flocking to fertility clinics--that was the quirky action of one determined woman. He is worried about something far more fundamental: our unwillingness to put up with whatever nature hands out, to accept our fates, to act our ages. "The good news," says Annas of human cloning, "is I think finally we have a technology that we can all agree shouldn't be used." (Emphasis added.) Lots of biotech is bad, he implies, but it's so damned hard to get people to admit it.
When confronted with such sentiments, we should remember just what Mother Nature looks like unmodified. Few biotechnophobes are as honest as British philosopher John Gray, who in a 1993 appeal for greens and conservatives to unite, wrote of "macabre high-tech medicine involving organ transplantation" and urged that we treat death as "a friend to be welcomed." Suffering is the human condition, he suggested: We should just lie back and accept it. "For millennia," he said, "people have been born, have suffered pain and illness, and have died, without those occurrences being understood as treatable diseases."
Gray's historical perspective is quite correct. In the good old days, rich men did not need divorce to dump their first wives for trophies. Childbirth and disease did the trick. In traditional societies, divorce, abandonment, annulment, concubinage, and polygamy--not high-tech medicine--were the cures for infertility. Until the 20th century, C.F. didn't need a separate diagnosis, since it was just one cause of infant mortality among many. Insulin treatment for diabetes (highly unnatural) didn't exist until the 1920s. My own grandmother saw her father, brother, and youngest sister die before she was in middle age. In 1964 a rubella epidemic left a cohort of American newborns deaf.
These days, we in rich countries have the wonderful luxury of rejecting even relatively minor ailments, from menstrual cramps to migraines, as unnecessary and treatable. "People had always suffered from allergies....But compared to the other health problems people faced before the middle of the twentieth century, the sneezing, itching, and skin eruptions had for the most part been looked at as a nuisance," writes biologist Edward Golub. "In the modern world, however, they became serious impediments to living a full life, and the discovery that a whole class of compounds called antihistamines could control the symptoms of allergy meant that allergic individuals could lead close to normal lives. The same story can be told for high blood pressure, depression, and a large number of chronic conditions."
Treating chronic conditions is, if anything, more nature-defiant than attacking infectious diseases. A woman doesn't have to have a baby when she's 63 to refuse to "accept the life cycle or life course." She can just take estrogen. And, sure enough, there is a steady drumbeat of criticism against such unnatural measures, as there is against such psychologically active drugs as Prozac. We should, say the critics, just take what nature gives us.
In large part, this attitude stems from a naive notion of health as the natural state of the body. In fact, disease and death are natural; the cures are artificial. And as we rocket toward the biological century, we will increasingly realize that a bodily state may not be a "disease," but just something we wish to change. Arceli Keh was not sick because her ovaries no longer generated eggs; she was simply past menopause. To say she should be able to defy her natural clock (while admitting that mid-60s parenthood may not be the world's greatest idea) doesn't mean declaring menopause a disease. Nor does taking estrogen, any more than taking birth control pills means fertility is a sickness.
"The cloned human would be an attack on the dignity and integrity of every single person on this earth," says German Research Minister Juergen Ruettgers, demanding a worldwide ban, lest such subhumans pollute the planet. (The Germans want to outlaw even the cloning of human cells for medical research.) Human cloning is an issue, but it is not the issue in these debates. They are really about whether centralized powers will wrest hold of scientists' freedom of inquiry and patients' freedom to choose--whether one set of experts will decide what is natural and proper for all of us--and whether, in fact, nature should be our standard of value.
Ruettgers is wildly overreacting and, in the process, attacking the humanity of people yet unborn. As Ron Bailey has noted in these pages, human cloning is not that scary, unless you're afraid of identical twins, nor does it pose unprecedented ethical problems. (See "The Twin Paradox," May.) No one has come up with a terribly plausible scenario of when human cloning might occur. Yet judging from the history of other medical technologies, the chances are good that if such a clone were created, the parents involved would be ordinary human beings with reasons both quite rare and extremely sympathetic. We should not let the arrogant likes of Ruettgers block their future hopes.