WORKS DISCUSSED IN THIS ESSAY
Arthur L. Caplan, Am I My Brother's Keeper? The Ethical Frontiers of Biomedicine (Indiana University Press, 1997).
Philip Kitcher, The Lives to Come: The Genetic Revolution and Human Possibilities (Touchstone Books, 1997).
Maxwell J. Mehlman and Jeffrey R. Botkin, Access to the Genome: The Challenge to Equality (Georgetown University Press, 1998).
Jeremy Rifkin, The Biotech Century--A Second Opinion: The Marriage of the Genetic Sciences and the Technologies Shaping Our World (J. P. Tarcher, 1998).
Lee M. Silver, Remaking Eden: Cloning and Beyond in a Brave New World (Avon Books, 1997).
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F or all its attention to a rather blasé Scottish sheep, the "debate over cloning" has never been exactly that. Instead, from the moment that Dolly's birth was announced, cloning became a lightning rod for conflict over the rapidly expanding gamut of genetic technology. For some, the new biotechnology promises great advances in the defining modern project of reducing suffering and increasing well-being. For others, extending human control over genes is the supreme act of hubris and, like all hubris, threatens paradoxically not to elevate but to debase us.
This division lies not only between warring camps, but within many people. Optimistically, we contemplate preventing congenital disorders like Down's syndrome, developing new treatments for diabetes and other illnesses, and even changing our genes to make our lives longer and healthier than ever in the past. Yet some products of the new technology are deeply unsettling. Insurance companies may soon take advantage of genetic testing to refuse to cover some congenital disorders. Scientists have developed techniques for producing frogs with no heads or central nervous systems, and some envision creating mindless "humans" as organ farms. Lee Silver, a Princeton University molecular biologist, predicts in his new book that within a few centuries genetic engineering will have made us into a multiclass society, where the GenRich (genetically rich) do all the important and remunerative work while the Naturals (people like us) sweep floors and provide child care.
These predictions call out for a line between permissible and impermissible genetic manipulation. But while prominent scientists, ethicists, and activists have made several proposals, a survey of these shows consistent inadequacy: satisfactory lines are hard to draw and harder to maintain. However, there is a fruitful way of assessing biotechnology. Genetic engineering promises to advance the core liberal values of humanitarianism—pressing back the boundaries of death and suffering—and free self-development toward personal fulfillment and excellence. At the same time, though, the new technology threatens to undermine the indispensable commitment to equality as both a social goal and a moral view about the bedrock importance of human beings. That change would have grave consequences for culture and public life. Grasping this possibility, and seeing its relation to the benefits that biotechnology brings, is the essential step in assessing the new biology.
The debate over biotechnology unfolds on a rapidly shifting field of technological possibility. Understanding this requires a few rudiments of genetics. Every cell in a person's body contains a complete genetic map of that person. In each cell are 46 chromosomes, tightly coiled segments of DNA; the 46 comprise 2 identical sets of 23. Each set of chromosomes contains an identical set of 100,000 genes—small DNA sequences. Every healthy person has not only the same number of genes, but the same genes as everyone else. References to "the gene for blue eyes" really refer to a variation on that gene, called an allele, which differs slightly in its DNA makeup from "the gene for brown eyes," actually a different allele of the same gene.
Sex cells, the sperm and the egg, have only one set of 23 chromosomes apiece. In ordinary reproduction, the two fuse to produce a new cell with 46 chromosomes. That cell then reproduces itself to become an embryo, a fetus, and a human being. The notorious "adult cloning" technique involves inserting all 46 chromosomes from an ordinary, non-sex cell into an egg that has had its chromosomes removed, beginning the development of an embryo that is genetically identical to the donor of the ordinary cell. "Genetic engineering," on the other hand, means inserting a new allele or new gene into the DNA of an existing cell, a process that is still hit-and-miss at best.
For all the excitement that the possibility has generated, no scientist has changed the genetic makeup of a human being in a way that can be passed on to future generations. Instead, current "genetic therapies" are of two simpler sorts. The most basic has no effect on human genes. It aims at diseases that develop when the body cannot produce enough of some vital substance, such as insulin. In one treatment for diabetics, for example, bacteria cells are engineered to produce insulin, then injected into the patient's body, where they do the work that her own cells cannot.
A second sort of treatment does modify a person's genes, but affects only non-sex cells and so is not passed on to the next generation. For instance, cystic fibrosis patients inhale the genetic material that produces healthy lung functions, suspended in a solution of cold virus. If the patient catches the cold, his lung cells may take up some of the healthy genetic material, and so work normally for a period.
Engineering that changes genes in a way that can be inherited must happen early, by insertion of new genetic material into a sperm or egg cell or into a single-celled embryo. This sort of engineering has become commonplace for laboratory animals, including lines of mice that contain human genetic material; and for farm animals, which are engineered to produce a medically valuable substance, usually in their milk—a bigger, split-hooved version of the insulin-producing bacteria. (The Scottish cloning team was after a technique for cloning medically useful—hence lucrative—sheep and cows.)
The comparative modesty of the current technology will not last long. Most experts anticipate a radical increase in the sophistication and reliability of genetic engineering. The Human Genome Project, an effort to map all 100,000 human genes, is conservatively expected to produce a complete picture within a century; some observers expect the map within two decades. Meanwhile, engineering techniques that can make use of this knowledge are developing apace. Although not everyone shares Lee Silver's conviction that elaborately engineered "designer babies" will become possible by the middle of the next century, no one denies that our trajectory is taking us in that direction and that there is no good reason to expect a sudden stop.
A TANGLED WEB OF LINES
Most of the debate over genetic engineering has centered on heritable genetic changes and cloning—the two areas where we might consciously affect the makeup of future individuals. Examining the merits and limitations of the lines that scholars, scientists, and activists have proposed to distinguish permissible from impermissible techniques illuminates how the core liberal commitments that shape reflection about this question come together and diverge in various ways.
The hardest line conceivable, a ban on all genetic interventions, has no serious, visible proponents. Although professional technology skeptic and sometime social forecaster Jeremy Rifkin flirted with this position in his 1984 Algeny, his new book The Biotech Century instead suggests that we should refrain from making heritable changes in any genome. Rifkin acknowledges the humanitarian reasons to approve of non-heritable therapies, but insists that heritable changes produce too many dangers, ranging from deadly new viruses to the depletion of genetic diversity, to be tolerated.
But Rifkin's dark predictions are secondary to his underlying concern that humans have made the natural world a source of tools and commodities, rather than a site of "the sacred." As he makes this case, Rifkin presents an illuminating picture of how drug companies and genetic researchers have collaborated to buy up the rights to all sorts of slightly engineered organic substances and processes. But Rifkin's moral argument is, in the end, an eccentric one: to keep whatever is still salvageable in nature out of human hands.
A hypothetical case makes this eccentricity clear. Faced with the chance to apply a prenatal cure for Tay-Sachs disease, few people would refuse it in order to leave the genome untouched. The choice would seem as perverse as a decision to keep the smallpox virus alive in order to acknowledge life's sacred character. We believe in reducing suffering, and doing so through genetically enhanced techniques strikes most of us, on reflection, as continuous with the ways that we currently work to achieve this. The right distinction must lie elsewhere.
Many proposed limits on genetic engineering try to draw a line between cure and "enhancement." Once the line is clear, cures are ruled in, enhancement out. This has long been a prominent proposal among professional bioethicists, and has made many more appearances in professional journals than in the popular press. It has received relatively little popular attention mostly because, as professional ethicists have begun to acknowledge, it doesn't work. The line won't stand still.
This is true partly because of problems of definition. As Arthur Caplan, who directs the Center for Bioethics at the University of Pennsylvania, points out in Am I My Brother's Keeper?, there is no simple standard of "health." We exercise, take vitamins, and eat well not to "enhance" ourselves beyond "health," but to "be healthy." So "enhancement" is a part of "health." At the same time, for anyone with a congenital defect, being genetically adjusted to an average level of functioning is plainly an enhancement—and, as such, is not different in kind from going all the way up to the maximum, "healthiest" level.
Caplan's book, a survey of issues in medical ethics that devotes only a few chapters to genetic engineering, addresses the topic as a set of discrete procedures and problems and makes little effort to draw general conclusions. Consistent with this approach, Caplan focuses on technical reasons for the shifting line. There are cultural reasons as well, though, and the two interact powerfully. Contemporary culture, particularly in a line of liberalism with roots in Alexander von Humboldt and John Stuart Mill, is deeply committed to the idea that people should be able to develop their talents as fully as possible, and acquire new ones if they can. This is now a large part of what we mean by "liberty." We accept that parents should be able to send their children to good schools, that the wealthy can hire personal trainers, that people who learn languages or take up instruments are behaving well, even nobly. One of the main moral defenses of the free market, in the time that it faced real competition from authoritarian socialism, was that markets allow individuals to pursue—if not always attain—whatever careers they find most fulfilling. All of this leaves us reluctant to honor any line when, just on the other side, we glimpse a richer life.
Acknowledging these difficulties, more and more thinkers have gone over to a view that some enhancement—whatever we mean by that—is inevitable. At a minimum, this means "enhancing" the population average by screening embryos that have been developed in vitro and implanting in the womb only the ones that are auspiciously endowed. More ambitiously, it might mean implanting alleles to encourage, say, the perfect rhythm, pitch, and coordination that a concert musician would require. At its most extreme, it could encompass the introduction into the human genome of "gene packets," essentially new chromosomes with whole sets of new genetic instructions: Princeton's Lee Silver envisions using these to redesign people in radical ways, giving some people physical and mental powers that we have not yet imagined.
LIBERTY AND EQUALITY?
After admitting that enhancement is inevitable, thinkers have a hard time finding a place to draw a new line between acceptable and excessive enhancement. Some, though, devote a good deal of hopeful speculation to the matter. Philip Kitcher, a philosopher of science whose knowledge of genetics and biology goes to good use in The Lives to Come, proposes a "utopian eugenics" in which parents will select their children's attributes as they see fit. Although he envisages no legal restriction on these selections, Kitcher assures his readers that families will participate in "widespread public discussion of values and the social context of decisions" and be guided by "universally shared respect for difference coupled with a public commitment to realizing the potential of all who are born." Thanks to this commitment, Kitcher writes, a just system of universal health care will make the same genetic procedures available to all families. Although Caplan is less bold in his forecasts than Kitcher, he issues the same optimistic recommendations.
Kitcher believes that the liberal commitment to humanitarianism and equality can coexist happily with genetic libertarianism. In judging whether this is true, it is instructive to consider the picture of "utopian eugenics" that Lee Silver presents in Remaking Eden: Cloning and Beyond in a Brave New World. Silver spins out a libertarian tale of biotechnology's future that is untrammeled by Kitcher's liberal niceties. Silver predicts that "the power to change the nature of humankind" will lead to exponential growth in differences between the engineered GenRich and the Naturals. Presenting an imagined history of the next millennium, he writes that in 2350, all "members of Congress, all entrepreneurs, all other professionals, all athletes, all artists, and all entertainers were members of the GenRich class." Then, engineering begins to multiply varieties of GenRich populations: "By the middle of the twenty-seventh century, there were at least a dozen different species of human descendants having chromosome numbers that varied from forty-six in Naturals to fifty-four in the most enhanced GenRich individuals."
The point of Silver's proposals is not their plausibility, although he is better equipped than most of us to assess that matter. Rather, his extremism exemplifies the defining moral danger of genetic engineering. Silver describes a world in which humanity, as a condition that we have in common, has disappeared. In this world, to call us "equal" would be almost a conceptual confusion. Equality is distinct from sameness, to be sure, but it does suppose enough commonality that the same projects, fears, and aspirations can make sense to everyone, and that all face at least commensurable limitations and hazards. Otherwise, the idea of equality loses its sense.
A threat to equality is usually also a threat to humanitarian values. When the bedrock of our equal moral importance is eroded, the significance of our suffering also fades. Almost every prospect for biotechnology's use suggests this danger. To begin close to home, prenatal tests can already reveal susceptibility to a growing number of genetic disorders. Insurance companies may refuse coverage for illnesses that could have been predicted by testing, and parents who can afford the tests face the decision of whether to bring an "imperfect" child into the world. This question receives elaborate treatment in Access to the Genome, Maxwell Mehlman and Jeffrey Botkin's account of the challenges that genetic engineering poses for fair social policy.
Beyond the important question of insurance coverage, Mehlman and Botkin do a good job of laying out the problems that costly genetic procedures may present for distributive questions in medicine. Genetic screening, to say nothing of more elaborate procedures, is almost certain to be expensive for the foreseeable future and so will probably be more readily available to the affluent than to others. This will exacerbate existing problems of inequity in health care.
Mehlman and Botkin, though, do not devote much attention to the broad humanitarian concerns that accompany distributive questions. To begin with, if the wealthy can anticipate and prevent genetic disease and others cannot, most congenital disorders will become "poor people's diseases." This would be a terrible reality—and a damning designation for any disease, as it tends to dampen research funding, policy attention, and public concern.
Testing poses a broader humanitarian concern as well. If the choice to abort "defective" fetuses becomes more common, there is real danger that these public distinctions will spill over into other areas of private life. What resources we commit to the congenitally disabled partly reflect a sense that their conditions are uncontrollable tragedies, which we are willing to share in making less painful. The more easily we can select against these inconvenient fellow citizens, the more likely we are to grow callous in our treatment of them. When the question, "What right do you have to exist?" has some sense, the conclusion, "Your life is no business of mine," takes on a grim plausibility.
Genetic enhancement poses more severe risks. It is perfectly plausible that we are within a half century of being able to permit affluent parents routinely to select the best endowed of many fertilized embryos. We may soon even be able to insert genes for the highest physical, musical, or intellectual potential into otherwise unremarkable DNA codes. Although it is not yet possible to confirm or disprove Silver's speculation, there is no good reason for confidence that it will not eventually be possible to add radically enhanced or wholly new capacities.
Even the less extravagant vision presents considerable problems for equality. In effect, well-to-do citizens could make the myth of aristocratic excellence a reality by ensuring that their children will, overall, be smarter, more attractive, and healthier than everyone else. Over a few generations, our class divide could begin to resemble the traditional Indian caste system, with a few exceptional Horatio Alger types joining the aristocracy, but with the excellent retaining—and consolidating—their prominence generation after generation. In this setting, there would be great temptation to abandon the already fragile goal of social equality in favor of a "rational" sorting out of tasks according to innate gifts. And, of course, as social division became deeper and less controversial, mutual moral indifference would seem ever more natural.
In this spirit, if we can engineer the GenRich, we can also engineer the GenPoor. Sometime in the next century, someone is sure to propose that it would be most humane to assign menial or "degrading" tasks to those unable to wish for anything better—the "natural slaves" that have been contemplated since Aristotle but only now may become a possibility.
Even the most modest scenarios could only be bad for democracy and humane social policy. The revered liberal John Stuart Mill believed that the votes of the educated should count for more than those of the lower classes and that "primitive" peoples like those of India were altogether incapable of self-government. Deep and ineradicable differences among persons would invite a renewal, not necessarily of those institutional distinctions, but of the spirit that deeply discounts certain groups' contributions to democratic deliberation. Moreover, perceptions of deep inequality and fading moral concern can only weaken institutions designed to help the most vulnerable and least fortunate.
Other reasons for worry have less to do with social divisions than with subtle features of moral temperament. Central to our honoring others' moral importance is the acknowledgment that their lives unfold by designs that we cannot make for them, or alter beyond a modest measure. Yet we contemplate a world where parents' anticipated delight in a child might have less to do with the mysterious grace of reproduction than with the assurance that they have selected the embryo that can replicate its mother's career as a concert pianist, or be the football star its father never was—or just be lovable because it is "perfect." The selfish conviction that our own desires should be the world's compass points is among the greatest barriers to genuine respect for other individuals. The more able we become to treat others as vehicles for our idiosyncratic aspirations, the less easily we will maintain a regard for their intrinsic importance.
Here, as goes the spirit, so goes the body. Honoring others' physical integrity lies near the heart of current views of what respect requires. The constitutional doctrine of privacy echoes a prevalent sense that a person is not free when her body is someone else's to use or control. The very idea of developing quasi-human bodies as living organ banks can corrode this sort of respect. That practice could only make us more callous toward bodies that house minds.
Alongside its myriad benefits, then, biotechnology makes possible a great increase in our capacity to treat others as vehicles for our desires, to be assessed by their convenience. It holds the potential to deepen our inequalities and to make them more explicit and inescapable. In these ways, it threatens to accelerate the trends of a time whose characteristic excesses are selfishness, mutual indifference, and the illusion of self-reliance. Biotechnology could accelerate some people's self-fulfillment terrifically, but at severe cost to the other liberal values of humanitarianism and equality.
SOME ROUGH BUT READY LINES
These grim scenarios are not inevitable, but they provide a polestar for us to steer by, a kind of summum malum to clarify our judgments. Knowing the greatest danger that genetic engineering presents will enable us to make the clearest possible assessment of its near-term risks and benefits. Recognizing this and, at the same time, perceiving how the prevalent proposals for governing genetic engineering run afoul of one or another basic liberal commitment, we can begin to make sound judgments about the issue.
To protect equality and honor humanitarian values, we should bar insurers from treating genetic illnesses as "pre-existing conditions" and from refusing general coverage to victims of genetic disorders. We should ban the use of tests that identify predilections to homosexuality or other stigmatized but harmless qualities. We should rule out, absolutely and in advance, the assignment of any institutional position—from enrollment in vocational classes to placement at Juilliard—on the basis of genetic profiles. This must, of course, be doubly true of political privileges—a matter not of instituting new principles, but of reminding ourselves forcefully of our old ones. To protect against presumptions of inferiority or superiority, we should ensure the absolute privacy of genetic profiles. And we should ban the development of human organ farms, if technology ever makes such things likely.
At the same time, as genetic therapies become more extensive, efforts to make American health care equitable will gain in importance. Only access to screening and treatment can prevent congenital disorders from becoming "poor people's diseases," with all the neglect that accompanies that status. Short of comprehensive reform, liberals should aim, cost permitting, to incorporate basic genetic procedures into Medicaid and other programs for the poor and to mandate similar coverage in the HMOs where many working people get their health care.
Most important, we should be always on the alert for proposals to make some of us more, or less, than human. Silver's vision of superior species may never prove possible, but we should see any approximation to it as the realization of our summum malum. We should take the difficult but important step of developing global accords to ban "super-enhancements." Definitions of these will be arbitrary at the margins, but no more so than any regulation. As provisional distinctions, we should forbid "gene packs," the extra chromosomes that Silver envisions, which would effectively create new genetic species; any enhancement that adds capacities that are not now part of the human lot, from the incandescent power of fireflies to the effective immortality that some students of aging have begun to contemplate; and any deliberate reduction in human powers, the production of the socially convenient "GenPoor." We should also bar the engineering of specialized excellences that would in effect produce genetic castes of, say, super-soldiers, athletes, or entertainers. In all of this, we must remember our essential charge: maintaining the balance of commitments and practices that will sustain equality, humaneness, and liberty together.
Balancing liberty and self-fulfillment with equality is not a new problem. In economic life, lawmaking, and politics, libertarians have always been willing to let some lives go very badly so that others can go unrestrained. Combating this willingness will be among the tasks of responsible liberals for as long as anyone should care to imagine. This task is sharpened by the fact that now, more than ever, maintaining or altering what can only be called the human condition is the responsibility of human intelligence and skill. We must ask what our practices are likely to make of us, and whether that prospect is compatible with what we think it fitting for us to be.
Liberalism harbors a paradoxical pair of commitments, a devotion to human improvement alongside a recognition that we cannot be improved beyond our need for each other, our capacity to harm each other and ourselves, and our need for institutions that recognize both of these qualities. We need to cleave to this paradox, now more than ever, in both public and private life. It may be that liberal ideals will flourish only if, alongside sound policies, women and men consciously surrender certain aspirations to self-remaking and accept the pleasures and limits of their humanity. Until now, in elemental ways we have simply been natural. Henceforth, to stay humane, we may have to conclude that we are all Naturals, and are in the end the better for it.