CHAPTER EIGHT: POLICY IMPLICATIONS
Newly informed of the origin of species and the mechanisms of evolutionary adaptation, Galton and the original eugenicists sought to apply their knowledge for the salvation and improvement of society. But the road was bumpy, their vision fogged, and the route unclear; before long, there were victims, and eventually, in the cataclysm of the Nazi years, the entire enterprise crashed. Today, it is standard practice to repudiate not only their beliefs, their biases, and their methods, but also their values and aims.
For two generations, it has been taboo to discuss the application of genetic knowledge to the design, management, and improvement of society. In light of our greater sophistication about heredity, this kind of thinking seemed pointless; and given the experience of many peoples with eugenics, also very dangerous. Genetic scientists and clinicians alike instituted a new orthodoxy, a practice which focused narrowly on the medical and on the individual. Their role was to be confined to providing information (and later, therapy) according to the wishes of the individual patient or client and without any thought of the impact of a particular intervention on society at large, whether for good or ill.
The social perspective on genetics, however, will inevitably be revisited as the revolution in genetic science and medicine progresses. As genetics permeates our lives, as more and more people come into contact with genetic screening, testing, and, eventually, intervention, we cannot fail to appreciate the fact that these individual encounters have effects on others. Governments and other payers with social responsibilities will be tempted to take these wider effects into account in deciding which services to offer to individuals. Because choices by individuals may sometimes have adverse effects on others, including the unconceived, public agencies may be moved to discourage or limit some of these options.
Moreover, our current aversion to social thinking about eugenics is not universally shared. The long-term leaders of Singapore and Malaysia have spoken favorably of old-style eugenics (Chan and Chee, 1984), and the People=s Republic of China recently enacted a ALaw on Maternal and Child Health Care@ which has eugenic provisions, including potentially coercive regulations on marriage and reproduction (Nature 1994; Qiu 1998).At least one community which perceives itself to be at particular risk has instituted a vigorous program of selection which has a marked eugenic flavor. The ADor Yeshorim@ organization, initiated by a rabbi, advises orthodox Jewish communities plagued by high rates of inherited diseases such as Tay-Sachs and Canavan disease. Dor Yeshorim offers tests for the genes in question to young people; matches which might produce diseased offspring are then discouraged by matchmakers (Wertz 1997; Landau 1994). Dor Yeshorim takes credit for the prevention of hundreds of cases of these diseases.
Our consideration of a range of ethical and social issues raised by advances in genetics stems from our conviction that these developments C both scientific and social C make it increasingly unwise to consider the ethics of genetics only at the individual level. What matters is not merely the ethics of the individual scientist, physician, or counselor, but the broader questions of justice, of claims for freedom and for protection from harm, and our obligations toward future generations. This book aims to provide a perspective for the development of public and institutional policy on genetics which takes these issues into account.
We will be cautious in pointing out the implications of our discussion for framing policy in the near to mid-term. Our account is stated in broad terms and in most cases would not imply support for specific regulations, laws, or practices until joined with detailed accounts of the individual problems these are meant to address and the likely effects and interactions of these measures. At the same time, the analysis we have provided of the implications of genetics for such issues as distributive justice, reproductive autonomy, and disability rights points us in particular policy directions. This final chapter both summarizes and extends our discussion of the practical bearing of our philosophical analysis.
I. Where does the Shadow of Eugenics Fall?
The Inevitable Comparison
The eugenics movement, which began to pick up steam about a century ago, marked the first attempt to apply the insights of evolutionary biology to our own species. However much the present genetic revolution may differ in its methods and its aims, those familiar with the career and consequences of the eugenics movement cannot easily avoid the comparison. Indeed, one of the signal differences between the new genetics and the old eugenics--vastly better science and technology--is simultaneously a potential cause for alarm.
As we noted in Chapter Two, one impediment to the realization of the grandest ambitions of the eugenics movement was its reliance, at that stage of scientific development, on selective breeding, pursued by methods that were ineffective (public appeals to choose mates on a eugenic basis), repugnant (involuntary sterilization), or both. The subtle and impressive methods of genetic engineering and the precisely targeted reproductive strategies born of genetic testing and screening provide us with tools that eluded the eugenicists even in their dreams. But if the eugenicists were wrong in their very inspiration, if the core values and inspiration were wrong-headed and evil, should we not be alarmed that more effective tools will soon exist for their realization? The description of Hitler's Luftwaffe as "Neanderthals in airplanes" vividly captures this concern: modern technology guided by a primitive moral sense can produce horrific results.
Public Concern About Genetic Research
It is not surprising, then, that to a degree unprecedented in the annals of science and public policy, the Human Genome Project and attendant advances in genetic knowledge, technology, and basic science have been greeted by a chorus of demands for oversight, regulation, and even prohibition. Though legislatures in the United States have been relatively cautious in enacting specific measures, European parliaments have been bold, and several international groups are in the process of proposing protocols and conventions.
Some of these measures are specific regulations of the conduct of science and of the practices of insurers and employers. But in their preambles, and in proposed conventions and protocols, are strongly worded defenses of the inviolability and dignity of each person in the face of a potentially dire genetic challenge expressions of concern have been voiced on behalf of leaders of all major faiths and by activists across the political spectrum. In Germany, a coalition of left-leaning Greens and conservative religious groups wages a vigilant campaign against complacent acceptance of promises of genetic progress. In the United States, a coalition of religious groups taking in the entire political spectrum was organized to petition the President for caution in genetic technology, a demand that ultimately resulted in one of the first comprehensive governmental analyses of these issues, the Splicing Life (1983) and Genetic Screening and Counseling (1983) by the President's Commission on Medical Ethics.
These ethical and social issues present obstacles to progress in genetic science and clinical practice even if no legislative impediments are enacted. In response to these public concerns, a good deal of current writing on ethical, legal, and social issues in genetics has sought to establish what we have referred to as moral firebreaks. The strategy has been to emphasize the risk or danger posed by certain kinds of intervention, identified by one or another commonly encountered distinctions, and then to urge voluntary adoption or even legislation to ensure that actions of the suspect category are not undertaken. These distinctions include those between negative and positive eugenics (that is, discouraging reproduction among the "unfit" and encouraging the "fit" to multiply), between genetic intervention for individuals and for society, between treatment and enhancement, between eugenic and medical uses of genetic intervention and information, and between germ cell and somatic cell genetic engineering.
Beyond Rules of Thumb
In our view, this strategy has only limited utility. Though we do find a place for some of these distinctions in our own proposals, it is at most as rules of thumb--supportable not because they demarcate an important boundary of our moral world but because they denote a point of convergence of diverse views or because they are a convenient "bright line" whose use can be recommended since the rough-and-tumble policy arena does not permit the use of finer distinctions. These rules of thumb, being neither self-evident nor in themselves of arresting importance, obtain whatever authority they possess from higher-level principles of morality and justice.
A further motivation for pursuing our discussion at a higher level of abstraction is to take into account the possibility that consideration of the implementation of these rules in a future society might force a reconsideration of the rules themselves, as we would expect in keeping with the method of reflective equilibrium (that is, adjusting theories and specific moral judgments in light of each other, together with other data, until a position of stability, not in need of further revision, is reached).
As we have noted repeatedly in this book, the genetic revolution provides the occasion for rethinking some of the basic concepts of moral and social philosophy. In our view, then, an approach that instructs us to get our moral bearings first and to set the terms of genetic policy thereafter falls victim to the challenge that the genetic revolution might someday pose to our current thinking about ethics. We expect that the broad moral guideposts we have outlined will bear further revision as new and unanticipated developments in genetic science, technology, and medicine require further elaboration and application to policy issues.
We make no effort to derive model statutes or regulations from our analysis, partly because we appreciate how hard it is to predict the scope and pace of genetic advances, and partly because we recognize that the sound application of ethical theory must be grounded in a wealth of empirical data about which we, as moral philosophers, have no expertise. There is a more positive reason, however, why we offer no concrete policy proposals: we have attempted to take a longer view of the issues, and this inevitably brings with it a loss of fine focus for objects in the immediate foreground. In addition, we gladly acknowledge the virtues of the division of labor, deferring to the valuable work that others are doing in advocating or criticizing various concrete policy initiatives, from regulations concerning the patenting of genes to proposals for eliminating genetic discrimination in insurance.
This book is devoted to determining the principles that might govern a just and humane society in the wake of the genetic revolution. We do not offer a comprehensive theory, but we do argue for and from a series of broad principles, most of which are consistent with contemporary liberal theories of justice. Our primary emphasis has been on equal opportunity, the prevention of harm, and on individual freedoms, but our treatment covers other principles as well, including those of citizenship and political participation, arguing broadly for an emphasis on inclusion--a value particularly pertinent to a genetic policy that seeks to steer away from the sins of the earlier eugenics. We trace a potentially important role for the state in setting and enforcing genetic policy. And though we argue for wide latitude in individual decisionmaking in genetic matters, particularly in the context of reproduction, we do not regard this as implying the desirability of relying on markets in lieu of social policies based on principles of justice. The remainder of this chapter suggests various policy implications of these principles.
II. Distributive Justice
Our survey of the policy implications of our philosophical analysis begins with considerations of distributive justice. Much of the extant literature on ethical and social issues in genetics is concerned with "freedoms from...", such as protecting the individual from threats to his or her privacy or freedom. It is unfortunate that in current writing on the genetic revolution, the problems posed sometimes crowd out the hopes fulfilled. Despite the profound moral challenges posed by these scientific advances, we believe that their promise far overshadows their danger. Accordingly, we turn first to an entitlement: what each person should be able to expect from society by way of provision of genetic services.
The Right to Health Care
What does distributive justice require in public policy regarding clinical genetics and genetic intervention generally? To the extent that these genetic interventions constitute health care, we argue for social policies that ensure these services will be provided to those who need them. The contribution of genetic intervention to human well-being, however, is potentially broader than health care, and here we do not endorse the same kind of broad entitlement.
Access to Health Care: Equal Opportunity as Entitlement and Limitation
Though we have not provided an elaborate case for universal access to health care, a subject that requires separate and extensive treatment, we have generally followed the lead of Daniels's Just Health Care (1985) and the writings of other theorists in linking the requirements of justice to a broad entitlement to services needed to protect or restore species-typical functioning.
To be sure, this entitlement is limited by resource constraints. As citizens of a country in which spending on health care, measured both as share of gross domestic product (one seventh) and in absolute terms (around $1 trillion) dwarfs that of any other past or present, we are mindful of the diminishing returns of overspending on health. The gargantuan scale of the U.S. health care sector, however, is also the major premise in an argument against its lack of universality. While billions of dollars are spent on therapies of little or no value to patients, millions of people lack insurance even for the most important health care needs. Priorities in the system as a whole are not in order. Access to a broad package of health services, we have maintained, is required for justice, since it is needed to maintain fair equality of opportunity, which disease otherwise threatens to undermine.
Including Genetic Services in the Right to Health Care
This societal obligation extends naturally to clinical genetics. Our conclusion here is consistent with standard medical and insurance practices in industrial countries, including the United States. Though such services as genetic counseling are currently in relatively scarce supply, shortfalls can be traced not to any principled rejection of genetics as continuous with other forms of medical care but to the experimental status of much genetic testing and intervention and to the shortage of physicians and counselors with the appropriate training.
At present, the principal focus of clinical genetics is reproductive medicine. The accumulation of information regarding risks posed by genetic defects is rapidly accelerating and will increase the volume of useful services manyfold. This is not information that is easily absorbed by most patients. Even assuming maximum receptiveness and attentiveness to the explanations of physicians and counselors--an unrealistically optimistic assumption given what is at stake in reproductive decisions--patients must acquire familiarity with genetic diseases they may have never heard of before and must appreciate the significance of the statistical data about estimating the risks.
Providing this information without sufficient opportunity for absorption, questioning, and repetition is worse than useless, for in creating fear and even panic it can harm the patient and inadvertently steer him or her toward poor decisions. Most physicians in the United States lack the training needed to provide even rudimentary genetic counseling, and patients must rely on clinical geneticists and genetic counselors. Yet the supply of well-trained professionals in this field is so sparse that, in one estimate, if the cystic fibrosis gene were the subject of population-wide screening, all the professionals' working hours would be taken up with the counseling necessary for a thorough work-up (Wilfond and Fost 1992).
But reproductive medicine is just one domain of clinical genetics for the future. As genes are linked to more and more diseases of adulthood, from specific cancers to neurodegenerative diseases, millions of apparently healthy individuals in the United States alone will seek careful estimates of risk and advice on how these diseases might be avoided.
To the extent that genetic counseling and other services in clinical genetics constitute an integral component of the standard package of needed health care services, there is a pressing need to expand the training of physicians in clinical genetics and to build the infrastructure of counselors, testing laboratories, and the like needed to meet the anticipated need.
Because the United States at present relies on a system of private, competing health care providers and insurers to deliver care, an argument that supports a societal obligation to provide health care has implications throughout the system. One with special application to genetics is the double bind faced by individuals who are at risk for treatable genetic disease. For these patients, genetic testing is urgent, for a positive test shows the necessity of treatment, while a negative test would show that treatment would deliver no benefit and would allay fears of future illness as well.
Yet those with positive tests may become uninsurable. Unless they are able to pay out of pocket for health care, or to obtain free care, the test that points to the need for care also precludes it. This is a vexing problem for those with late-onset diseases such as hereditary hemochromatosis or genetically based colo-rectal cancer. It is even worse for children, whose parents may be reluctant to ask for testing in the fear that the entire family will be denied insurance and therefore access to care. This is precisely the experience of sufferers from Hippel-Lindau (VHL) disease, which causes brain tumors, necessitating MRI scans followed by surgical removal of malignant growths. It also affects the 600,000 Americans with polycystic kidney disease, for which care may be enhanced if done in connection with tests for the PKD1 gene (Beardsley 1996). The potential number of those adversely affected by these threats to insurability is much greater if we take into account Francis Collins's warning that these fears imperil the clinical mission of the Genome Project and genetic research as a whole.
These recommendations for incorporating beneficial genetic tests and interventions into an entitlement to health care and for expanding the educational and counseling infrastructure are entirely familiar and are accepted generally among those who agree, as we do, with the proposition that a just society must provide the basics of health care for all its citizens. But the extent of the entitlement to the services of clinical genetics is not fully determined by subsuming them under the general heading of needed health services. Some special features of clinical genetics engage our account of the basis of the societal obligation to provide health care, providing further reasons for ensuring access to these services but also a basis for considering their limitation.
Our analysis reinforces the case for a social obligation to provide genetic health services because of our reliance on an account of health care that places great importance on fair equality of opportunity. Opportunities of the range and type we are speaking of--that is, the broad array of paths of life, vocational and otherwise--can be restricted by the sheer pain and disability inflicted by disease. But they can also be closed off by lack of access to information needed for effective planning, and in particular they can be truncated by erroneous information that the individual might come by in the absence of qualified professional counseling or as a result of inadequate services provided in health care settings. A genetically healthy woman who remains childless for fear of passing on the genes produced in her family of origin is denied some of the opportunities of fulfillment that most can take for granted. The same would be true of a young man whose life plan was shaped by an erroneous expectation that his life would be cut short by an inherited condition that took the life of his relatives.
Limits on the Entitlement to Genetic Services
Resource constraints, however, limit the extent to which remedies for these deprivations can be offered under health care entitlements. The pattern of provision required by the opportunity account might omit certain genetic services for any of several reasons. In these early days of the genetic revolution, the benefit, if any, of new tests is often unclear for years. In tests of uncertain significance, the information provided to the patient may have little value in medical decisionmaking or life planning, or may even tend to lead patients into imprudent decisions. In poorly executed genetic screening programs in the past, for example, parents unlikely to have afflicted children have foregone childbearing, and at the time of this writing geneticists have expressed concern that women who test positive for one or another form of the BRCA1 and BRCA2 (breast cancer) genes may imprudently rush to have preventive mastectomies.
Where the uselessness or hazard of genetic data derives from the fact that not enough is known, nor could be known, about the likely course of events following a positive diagnosis, this service might be a candidate for exclusion from the standard list of benefits in order to make effective planning feasible. This will remain the case even if, as is likely, strong or even intense demand for this information is expressed by patients themselves (particularly when prodded by those who profit from providing the tests).
At the time of this writing, BRCA1 and BRCA2 are deemed by most specialists to be of much too uncertain significance to make testing prudent among any but a small number of very high-risk women. Counseling before the administration of a test may be as important, for the purpose of avoiding harm, as counseling after a positive result; indeed, one result of counseling is often a decision not to submit to the test. This pattern is likely to be repeated for many years as one gene or another is discovered to have some statistical association with a disease, and the pressure on health care authorities to permit patients to make these allocation decisions may be unrelenting.
A second category of genetic services that might be excluded from a package of basic health services under the opportunity account, depending on cost, would be tests whose predictions may be reasonably certain and fully comprehensible but whose results might provide little or not assistance in making either life plans or medical decisions. Learning of the likely cause of death at an advanced age, assuming no prior accident, infectious disease, or injury, might be such a case, as long as nothing were known that could be done to head off this fate. This would not extend to late-onset conditions, such as Alzheimer's dementia, that are likely to necessitate long-term care and for which savings (and insurance, if obtainable) would be prudent at the moment of diagnosis.
A third category of genetic services that might not be provided for under a health system whose rationale lay in the opportunity account consists of those targeted not toward disease--that is, to restoration and maintenance of species-typical functioning--but to enhancement of the organism or to other changes in a patient's constitution that answer to what Daniels, following David Braybrooke, terms "adventitious needs" (Daniels, 1985). These are requirements for "contingent, idiosyncratic" projects rather than the "course of life" needs that human beings experience regardless of their personal choice of life plans. For the most part, these will be "enhancements" rather than "treatments."
As explained in Chapter Four, these demands are conventionally placed in the category of "mere preferences" and out of the category of "need" altogether. While we have not argued for any fundamental distinction underlying these categories, we have noted that for practical purposes the convergence of views among those supporting a range of theories of distributive justice on this boundary between what justice requires and what may remain optional provides support for policies that embody it.
These will join such medical practices as cosmetic plastic surgery (for patients who are not disfigured). We have noted above that an argument based on opportunity exists for required provision of certain medical services that cannot reasonably be classified as treatments. Abortion is an example, with its important bearing on career and family planning. A similar case might thus be made for some genetic enhancements, if they too played an important part in meeting "course of life" needs, or if denying these services had an important adverse effect on opportunity.
Additional Arguments for Access to Genetic Interventions
The case for access to genetic services is not limited to citing their effect on opportunity and their efficacy in preventing serious harm. A second argument proceeds from the fact that the genetic revolution has been stimulated by large-scale public investment. The Human Genome Project itself is a tax-supported program of the Department of Energy and NIH, and many of the key advances in clinical genetics have derived from research supported by NIH grants. These funds were drawn from the population as a whole and their fruits should be returned to them.
To be sure, the field of biotechnology, including human genetics, has been developed by a hybrid public-private web of laboratories and facilities. Private venture capital has made it possible for many of the benefits of the genetics revolution to reach patients. But even in these cases, the scientists who constitute the chief assets of these companies typically develop their research in state-supported environments and retain a base within academia.
An additional reason for access to extensive genetic services is the role they play in supporting reproductive self-determination. We argued in Chapter Five that protection of reproductive freedoms require more than the absence of restraint. A potential parent will be in a position to make optimal reproductive decisions only if given a full account of any significant genetic risks, together with counseling on strategies and alternatives. Prospective parents who are afforded expert, extensive, and patient genetic counseling, where indicated, are in a much better position to make decisions that are best for themselves, other family members, and the well-being of any children they bring into the world.
III. Securing Equality
If People Are Not Equal Should We Treat Them So? Should We Make Them So?
Anti-egalitarians sometimes talk as if their opponents refuse to face reality. Egalitarians, in their view, have to make believe that people are equally endowed with the talents and character traits conducive to fulfillment and success. Anti-egalitarians charge that egalitarians know, in their heart of hearts, that people are not evenly blessed with these traits, yet that for fear of lending support to social policies that would take these differences into account, egalitarians insist that the differences do not exist.
To be sure, the anti-egalitarian's egalitarian is a straw man. What virtually all egalitarian theorists wish public policy to promote is equality of treatment and equality of opportunity, which is in most respects as feasible in a population of diverse talents as it is in a group of exact peers. Nevertheless, in the anti-egalitarian caricature, bad faith lurks just beneath the surface, for equal opportunity in a land of unequals would produce merely a meritocracy (which Herrnstein and Murray  insist that the United States has already become), where success, since it would depend on talent, would be much too unequal for the egalitarian. These authors argue in The Bell Curve that the Founding Fathers intended equality to hold only for negative rights, quoting Jefferson in praise of the "aristocracy of virtue and talent, which Nature has wisely provided for the direction of the interest of society....the most precious gift of nature."
Neo-eugenic writers further from the mainstream have written hopefully of the ideological fallout of the Human Genome Project. Roger Pearson, long associated with Mankind Quarterly, funded by a foundation which has supported eugenic and racist research, writes in a recent issue of that journal that:
Biological egalitarians are fearful that the knowledge acquired as a result of the human genome project will destroy the plausibility of their universalist ideology. They are particularly concerned about the revival of scientific interest in group differences which will unavoidably result from the construction of 'demic maps' tracing the genetics of regional populations of different evolutionary ancestry; and by throwing a sharp and revealing light on what had hitherto been a debatable area of human knowledge will explode the anti‑evolutionary myth of universal biological uniformity.
Mankind Quarterly is generally regarded as a fringe journal, despite its many links to writers cited by such mainstream figures as Herrnstein and Murray, and the presence of sentiments like these there does not in itself demonstrate that such views lie, like a poisoned aquifer, just beneath the surface of polite society. What is more notable for public policy purposes is the link that Pearson forges between the views of The Bell Curve and the Genome Project. Can we expect the project to encourage and legitimate these political views among people who already share some of Herrnstein's and Murray's skepticism about egalitarianism? How might these sentiments affect politics and public policy? Are they mistaken, and if so where does the mistake lie?
Our discussion engages this debate with two quite different responses. One replies to the claim that a view of justice that places a high value on equality and equal opportunity makes little sense unless we pretend that people have equal talent. The other asks what should be done in the event, however far-off and unlikely, that some of the differences in talent could be narrowed by deliberate genetic intervention.
Will Human Genomic Research Push Society to the Right?
Political debates over how much the state should intervene on behalf of equality and equal opportunity range generally across the familiar left-right spectrum. So, too, have accounts of the role of genes in social and economic success. Strongly hereditarian accounts of human talents tend to be favored by the right and disputed by the left, even though the contribution of heredity is ostensibly a scientific question that might be answered regardless of politics, because it is assumed that to the extent that talents are inherited they cannot be fostered (and opportunity cannot be equalized) by social reform.
Along with many others, we have pointed out that this latter assumption involves numerous non sequiturs, such as the unwarranted jump from the heritability of a trait to the inalterability of a character, and even from the inalterability of a character to the impossibility of environmental changes to reduce or erase the potential limitation (one remedy for myopia is eyeglasses; another is larger road signs. For these reasons, an egalitarian vision for the social order can consistently be espoused by someone who believes that talents are unequally distributed and even that these patterns of distribution reflect genetic differences in some cases. In this sense, egalitarians have little to fear from the revelations of human genomic research.
But what of inherited differences in talent that cannot be ameliorated, nor made moot by environmental changes? As Rawls and others have made clear, fitting tasks to talents need not involve putting the gifted at the top of the economic heap, either in perks or in pay. Furthermore, the very differences in talent and motivation that undoubtedly do exist can be turned into assets even for the worst-off, given appropriate incentive structures and redistribution. For the just society, as Rawls envisions it (1971),
a meritocratic society is [not] a danger....For...the difference principle [permitting inequalities only so long as they benefit the worst-off] transforms the aims of society in fundamental respects. This consequence is even more obvious once we note that we must when necessary take into account the essential primary good of self-respect...the confident sense of their own worth should be sought for the least favored and this limits the forms of hierarchy and the degrees of inequality that justice permits.
This is all that the moderately egalitarian liberalism of Rawls demands. It would call on the state for a much more active interventionist role on behalf of the less well off than we have seen in the United States for several decades, but it is does not demand that the egalitarian liberal deny the possibility that humans differ in natural ability or talent, and no discoveries turned up by the Human Genome Project will undermine this philosophy.
Must Everyone Have Access to Enhancements?
These considerations show that near-term advances in human genomic research do not threaten conventional redistributive liberalism by proving that not all are born equal. Still, the genetic revolution might pose a different kind of challenge: What if, in the far future, we are able not only to identify human inequalities but to do something about them? It is not worthwhile to engage the reader in an elaborate discussion of the options for the long term, since our speculation will almost certainly be out of date by the time that it could have any application. Nevertheless, the contemplation of politics in connection with the genetic revolution cannot help but be drawn to the radical question: If we could literally re-engineer the genetic code, should we make people more equal? If talents become even more subject to purposive distribution than now--if we learn how to rig the natural lottery--how should they be distributed in a just society of the future?
Perhaps it is enough to state that the contribution of genes to talents---traits that in any case are defined differently by particular cultures and markets---is so indirect and random that it is nearly nonsense to talk about "distributing" talents. But even if this prospect belongs in the realm of science fantasy, consideration of it might illuminate our choices should we acquire the powers to distribute talents even in very modest ways, such as boosting memory capacity.
With the prospect of taking steps to equalize human talents through genetic engineering nowhere in sight, nothing in our argument poses this as an urgent social task. Indeed, should human beings ever reach this stage of technological accomplishment, our argument would only suggest an attempt to ameliorate those genetic disadvantages that are most damaging to opportunity or that cause serious harms, rather than to bring all talents into line. In particular, there would be no justification in levelling down. Rawls, in his note on eugenics in A Theory of Justice (1971) argues that
it is not in general to the advantage of the less fortunate to propose policies which reduce the talents of others. Instead, by accepting the difference principle, they view the greater abilities as a social asset to be used for the common advantage.
This passage recalls the socialist eugenics of such figures as Muller, Brewer, and Serebrovsky (see Chapter One), who proceeded from the premise of talent as a social asset. But for Rawls, the just society would tend toward equality. For
it is also in the interest of each to have natural assets. This enables him to pursue a preferred plan of life....We might conjecture that in the long run, if there is an upper bound on ability, we would eventually reach a society with the greatest equal liberty and members of which enjoy the greatest equal talent.
In this view, a just society would permit inequality of talent, even if something could be done to equalize it, but (given the conjecture) it would eventually "level up" to the extent that the inequalities would disappear.
Though we do not believe that justice requires policies that enforce equality of talent for equality's sake (assuming, once again, that this were feasible), there might be occasions, particularly in a less-utopian stage in which justice has not been fully realized, for discouraging certain talent-enhancing steps that would widen existing gaps. These include zero-sum game situations in which an intervention is sought by a person, or by people for their children, that offer benefits only because they confer positional advantages on others: to be quicker, smarter, or taller, say, rather than to be long-lived or healthy, the benefit of which is only marginally related to the superiority it confers to the beneficiary in any competition with those with no access to the intervention. In these cases, what is good for one is thereby bad for others, and is undertaken in part for that reason. The inequality brought about would be objectionable not due to envy, but because of the commitment to ensuring that inequalities work to the advantage of all rather than to the detriment of all but the fortunate few.
Concern would also be justified for those individual gains that have the effect of raising the requirements for effective participation in important forms of social cooperation. As discussed in Chapter Seven, the category of "disability" is to a considerable extent a social one, in the sense that the ability of an individual to participate fully in that group's affairs is a function both of the individual's particular assets and the demands of the social environment. Wheelchair-accessible buses are only the most obvious example. Well-engineered roads, for instance, can be safely negotiated even by those with slow reflexes, permitting the latter greater mobility. The same is true for a host of physical and cognitive limitations.
Our society has learned through its efforts to accommodate people with disabilities that in many cases lowering the barriers to participation need not be unduly burdensome to others. Still, many accommodations involve losses as well as gains. Tax codes and forms that might be fully comprehended by the cognitively impaired, for example, might be insufficiently detailed for efficient and fair allocation of tax burdens, and the gains for the few would not justify these losses.
And what of enhancements that do not inflict disability on those who lack access to them, or that benefit simply by conferring competitive or positional advantage? We are familiar with parents who seek to give their children every advantage, without thereby lowering the chances of others, but while knowing too that the children of others will not be similarly advantaged. Though there are always some interactive effects (if my child is admitted to a selective college, some other child is rejected; conversely, in a redistributive society my child's achievements will redound to the benefit of those left behind), these are not the main concern in such cases. Is there an injustice because of the gap between those who get and those who do not--an injustice, that is, because of the pure fact of inequality?
From the foregoing, our general answer would have to be "no," so long as the society were redistributive, as it would be, for example, if governed by Rawls's difference principle. But that principle was conceived to govern the allocation of resources regarded as "social," not "natural." In part this is because it is commonly thought that by definition only social advantages are distributable. If society is ever in a position to "distribute," through genetic engineering or genetic pharmacology, characteristics stemming from genes that have been classified as "natural" assets, it is not clear that redistributive principles permit inequalities. Indeed, as we have seen in Chapters Three and Four, some of the most prominent and well-thought-out theories of distributive justice might be taken to imply that intervention in the natural lottery may sometimes be required.
It is difficult to engage this subject even speculatively, since we have little idea what these personal assets would be like. But those that afford their bearers greater fulfillment and enjoyment without much corresponding gain in productivity or social contribution could not return benefits to those left behind. Unless the resulting inequality would inflict harms on the worst-off--say, by tending toward class divisions, segmentation of society, or a lowering of self-respect--we do not see the necessity of public policy to prevent individuals from seeking these advantages even when not all can do likewise.
Enhancements Versus Treatments
Inequality apart, the use of genetic techniques to enhance the human constitution rather than by way of prevention or cure of disease may give rise to some particular problems that are less likely to be posed by therapeutic interventions. Enhancement interventions may produce unanticipated and undesirable side-effects, and the gains obtained may be less tangible and less clearly desirable than relief from disease would be. This is a general reason to be less sanguine about enhancements than about treatments.
We conclude from these considerations that, even were the genetic revolution to progress to the point that re-engineering of the human genome would prove possible and effective, no general obligation would exist to attempt to engineer equality. Pursuit by individuals of enhancements that might create unequal genetic endowments would be permissible in a society governed by the principles of justice that we presently recognize as desirable in our own society. The fact that these interventions constitute enhancements rather than treatments has no fundamental significance and ought not be used to support a public policy ban on all enhancements. Differential access to these enhancements ought to be restricted only when they threaten harm or unjust limitations on opportunity to others, as they might in conferring positional advantages on the fortunate or in imposing the great burden of disability or exclusion on the least favored.
Reproductive freedom, and the liberty to construct and conduct family life, are potentially both enhanced and threatened by the genetic revolution. Advances in mapping genes have already provided potential parents with more information than has ever been available about the likely traits of their offspring. These screening and testing measures, together with a broadening range of reproductive techniques permitting testing and selection of embryos, even now afford some parents a measure of control over the kind of child they will have. In the future, much more could be determined by planning and design through engineering techniques.
The authors of this book join in the current legal consensus, and the majority public opinion that supports it, in favor of a broad sphere of reproductive freedom and endorse its institutional protection through appropriate legal rights. At the same time, the technology that permits reproductive decisions that will enhance the lives and opportunities of children to come could also be used in ways that would harm these children and limit their opportunities. Germ cell genetic engineering could visit these harms on many generations to come. The responsibility for using these techniques to good effect rests primarily on prospective parents, but we argue for a role for the state in some instances. We will turn to these limits after a consideration of reproduction freedom in light of the eugenic past.
Reproductive Freedom and Coercive Eugenics
In Chapter Five we argued for wide, but not unbounded, latitude for parents in determining the circumstances of reproduction and, to a large extent, the kinds of genetic enhancements they secure in the child's interest. This freedom is of crucial importance in public policy regarding reproduction in the wake of the genetic revolution, in part because reproductive freedom was the freedom specifically targeted for curtailment by those eugenicists who supported sterilization and other abridgements of this freedom in pursuit of social advancement.
As Diane Paul (1995) has pointed out, social attitudes toward reproductive freedom are so different today from the early decades of this century, at least in the United States, that history is virtually certain not to repeat itself. The state is not likely to begin any new campaign of sterilization or other intrusion into reproductive freedom for the sake of society's genes, no matter how much is learned about what these genes do. Since involuntary sterilization and eugenics are synonymous for many of those who warn of the danger of a recurrent eugenics, this great change in the climate of opinion is a consideration that can, in large measure, set these fears to rest.
Nevertheless, individual reproductive freedom is not fully secure. It could be threatened not by the state, but by a variety of other agents, ranging from social pressure to the actions of insurers. None of these needs to have the force of law to have effect.
Genetic tests will foretell not only many characteristics that a child will have and will develop, but also the costs they will impose on others. As the Aeugenic catechism@ quoted in Chapter Two indicates, such moral arithmetic was a constant theme of the old eugenics movement. This kind of thinking probably did help pave the way for the sterilizations and worse (Russo and Cove 1995). In our own time, we have experienced public resentment (with eugenic overtones) of the childbearing proclivities of women on welfare, a subject that lends itself readily to politicians seeking to foment resentment against the poor. In this instance, there has been relatively little emphasis on greater use of abortion or even birth control, perhaps because the source of political support for curbing welfare benefits largely overlaps the socially conservative population, which tends to favor sexual abstinence, but the implication that reproductive practice should be altered to reduce social cost is open and explicit.
As it becomes clearer which prospective parents might transmit genes that produce conditions resulting in social costs, these individuals might experience a social environment hostile to their reproductive plans and aspirations. Health insurers and employers could exert powerful pressure in an effort to avoid the costs of care for children with severe health care needs. Their influence could take the benign form of offering all manner of diagnostic tests, or, more coercively, of threatening to withhold or not renew health insurance should the parents have children in the face of a positive test result.
The potential conflict between individual reproductive freedom and societal interests is real, though there is not a sense of crisis at present. There is for now a measure of breathing room. Our society can afford, and should tolerate, some cost-generating reproductive behavior. Fortunately for all concerned, such behavior is unlikely to be a major phenomenon in any case. The interests of parents and potential offspring are generally in alignment. Cases of parents wishing evil toward children unconceived are rather rare. And because parents generally benefit from healthy children, and want their children to be healthy, the interests of parents and society are also generally aligned. This alignment projects forward into the future as well. As John Passmore (1974) has argued:
Men do not love their grand-children's grand-children. They cannot love what they do not know. [But] they hope that those grand-children, too, will have grand-children to love. They are concerned, to that degree about their grand-children's grand-children...as it were, an anticipation of their love....By this means there is established a chain of love and concern running throughout the remote future.
As Passmore noted, this alignment is imperfect. Not all parents, or grandparents, mean well; some are negligent or inept. Our arguments support some limits on reproductive freedom. Parents ought not to bring into being children whose very existence involves so much suffering that theirs is a wrongful birth. The state might legitimately insist that prospective parents at risk of bearing these children avail themselves of tests that would predict the risks.
Moreover, potential children, we believe, should be ensured an "open future" that will secure a choice among a wide range of life plans, and any genetic interventions that would greatly restrict this range of choices would be unjust to the child. The state should therefore enjoin physicians from providing these particular services. It will not thereby be guilty of dictating to families which values they should live their lives by, for the point of this restriction is to preserve a choice of values rather than to predetermine the choices a child might eventually wish to make.
Restrictions on Parental Choice
The primary rationale for limiting parents' freedom of choice in genetic decisionmaking in reproduction is protection of the child. As noted in Chapter Five, the notion of harm to the as-yet-unconceived child presents a philosophical mine field. Great care must be taken to avoid paradox, since, in many cases, the particular child "harmed" by mistaken genetic choices would not have come into existence had the "mistakes" not have been made.
We have supported the commonsense view that parents act wrongly when they make reproductive decisions which result in their children suffering from avoidable handicaps and maladies which might have been avoided by wiser genetic decisions, and that public policies directed to the health and well-being of children have application in this genetic case as well. Since certain decisions made in the course of reproduction might have adverse consequences for other children and adults--including direct harms, disadvantage in positional benefits, and marginalization and exclusion in the (hypothetical) case in which those not provided with enhancements are in effect disabled--we favor also some legal restrictions on what parents may ask of genetic intervention on behalf of their children.
These restrictions, even in sum, are bound to be relatively minor. Stronger intervention on behalf of the public purse, or of the children of parents seeking genetic services, or of other children who might be adversely affected might provide tangible benefits for these parties. But because of the basic alignment of interests, these should be regarded as the fair costs of a regime of robust liberty. In the absence of crisis, they must be counted as tolerable costs.
However, such unfortunate choices can be minimized by vigorous adherence to our first policy recommendation--the provision, at public expense if necessary, of greatly expanded clinical genetic services. Prospective parents who are adequately informed are in general less likely to make judgments that fly in the face of reason and needlessly burden their own children. The same holds true for parents who are provided with alternative means of having children, when the more customary methods threaten genetic harms. By bolstering the material conditions for reproductive freedom, the state can thus remove some of the potential pressure to curtail these freedoms.
V. Citizenship and Inclusion
The low reputation of the eugenics movement is due in large part to its association with assaults on reproductive freedom. But we have argued, in Chapter Two, that a more pervasive moral failing of eugenics was the zeal with which many of its mainstream adherents expressed opinions and endorsed initiatives that devalued and marginalized large segments of the public.
Perhaps the most important policy objective in guiding and regulating the social uses of the fruits of the genetic revolution will be to ensure that maximum benefit is obtained while avoiding the exclusion and stigmatization of any of our fellow citizens. If our society succeeds in this objective, we will have repudiated and triumphed over the baleful promise of the earlier mainstream eugenics movement; if not, we will have succumbed to the same moral failing. As with reproductive freedom, also a victim of that movement, certain costs must be judged worth incurring to preserve this value of inclusion based on equal respect--even if they seem to buy little that is more tangible.
Advances in genetic knowledge and techniques threaten to divide, marginalize, and exclude for two main reasons. One is the phenomenon of the so-called genetic ghetto, which threatens some of those identified as having defective genes with exclusion from the principal institutions governing social life. The other is the perceived threat to people with disabilities, some of whose advocates find in the promises made on behalf of the new genetics a theme that casts doubt on their very right to exist.
A Ghetto Walled by Data
People facing potential difficulties tend to have interests that are much more uniform in prospect and divergent after the fact (Daniels 1974, Gibbard 1983). When each of us is ignorant of what may befall us, but all consider ourselves vulnerable, we have a personal, self-interested stake in banding together for mutual support in the face of a common threat. Once it is made clear which of us is actually threatened and which will emerge unscathed, the latter will perceive themselves as carrying a burden if their fortunes remain pooled. The burgeoning tide of knowledge about a person's genes and the bearing of these genes on health and other states is a case in point. The genetic veil of ignorance is about to be lifted.
It is not just insurance companies who stand to lose if a person with debilitating genes is included in the insurance pool; so, too, do the other insureds, unless they can easily transfer their patronage to an insurer more adept at avoiding these bad risks. Similarly, each person seeking a mate hopes that their intended will love and accept them regardless of any problem genes they may later be found to carry; but once it is known who is afflicted and who is not (or who is badly afflicted and who is afflicted only lightly), each party is able to see clearly who is carrying the burden and who is sharing it. Unless genetic information is secured under a regime of strict privacy, a difficult task with any kind of information, the fault lines that divide us may become exposed and unbridgeable.
The genetic ghetto threatens because these bifurcations and divisions build on one another. For the reason stated earlier, it is doubtful that rights of genetic privacy will extend to customers wishing large life insurance policies. This may threaten the well-being of that individual's family (though the insurer would reply that the threat came from the gene rather than from the insurer). But the effect may be much greater when this person is told that a business loan he or she requires cannot be granted unless the applicant has successfully purchased a large insurance policy.
Public policy safeguards to protect against the formation of a genetic ghetto may have to attack the problem indirectly. Strict laws of privacy governing medical records have a role to play, but they cannot solve the problem alone. One reason is that information about genes can be, and usually is, gleaned without the use of DNA probes (for example, through the taking of detailed family medical histories). It is difficult to devise a rule that bars consideration of more prosaic medical data with an eye for hereditary conditions. Another reason is that, as in the case of large-policy life insurance, it is not clear that each person should be able to gain an advantage by learning about his or her genes and refusing to tell.
In the end, a comprehensive approach to prevent the relegation of segments of the population into a genetic ghetto may require universal health insurance, with vigorous enforcement (if coverage remains in the private insurance market) of regulations that punish covert underwriting. We favor these measures on their own merits. Those who are oppose them bear a special responsibility to consider carefully whether alternatives exist that would successfully block the formation of the genetic ghetto, and, if not, whether they agree with our contention that the avoidance of exclusionary tendencies is of overriding concern in the wake of the genetic revolution.
Devaluing the Less Than Perfect
One of the fears engendered by the new genetics is the prospect that an apparently healthy, "normal" person will wake up one day, in the manner of Kafka's metamorphosis, to be exposed as some kind of "defective"--a carrier of genes that will cause or hasten the development of some terrible condition, and that would similarly brand and doom all the person's descendants. On that day, for reasons we have discussed, the affected individual faces the unwelcome prospect of being perceived as different, one of "those people," a person whose problems and prospects are at odds with the community rather than part of any shared fate, and one who others seek to be distanced from in both contractual and personal social relationships.
To a "normal" person with these fears, people with disabilities can say: welcome to our world. People with disabilities have experienced social isolation and discrimination for a long time, and the ghetto that threatens those shown to harbor "bad" genes is the district in which people with disabilities already find themselves.
In one sense, the threat of the genetic ghetto is that, from the social point of view, the person with "bad" genes will suddenly become disabled--not in the sense of being unable to function, for many of people with disabilities function well, in part because they have tailored their goals and habits to their abilities. But this person will share the social space inhabited by people with disabilities in the sense that much of his or her life will be affected by the exaggerated importance that others put on this one aspect of life.
Although lame or blind persons may think of themselves first in terms of other identities--men or women, Catholics, parents, Americans, teachers--for many with whom people with disabilities must interact they will be identified first of all as lame or blind. And much of the rest of a social interaction, near or long term, may be premised on this identification. Similarly, individuals shown to have "problem" genes may find themselves socially, professionally, and commercially isolated, rather than treated "as individuals"--that is, in keeping with the very complex set of physical, psychological, and social attributes that make up their personalities, which are trivialized and disregarded when identified simply as a member of a particular group.
Even if the new genetics offers the prospect of company, however, people with disabilities have no cause for cheer. Indeed, those whose status can be traced to inherited characters stand to suffer even further isolation and discrimination. The victims of sterilization in many countries during the heyday of the old eugenics (and of mass murder in Nazi Germany) were for the most part picked out not for their disabilities, but for having genetically transmissible disabilities. The threatened creation of a genetic ghetto might portend a further exclusion and discrimination for this population.
As we discussed in Chapter Seven, people with disabilities as a group face three further, potentially powerful, less tangible threats from the new genetics. One is that the possibility of screening for the genes associated with some disabilities will create a climate of opinion in which the birth of children with these conditions will routinely be regarded as an error or mistake, either in medical management or in parental judgment, or both.
The second, related fear is that the act of screening for and avoiding these births (whether by choice of gametes, by abortion, or by in vitro or in utero therapy) constitutes an expression of devaluation or animus, both on a personal and a social level, that will further stigmatize people with disabilities.
The third concern is that unequal access to genetic means for enhancement and health will both worsen the relative position of people with disabilities and increase the numbers of people with disabilities, since the societal norms for "normality" will changed, with higher levels of functioning required for participation in social interaction and institutions.
Reducing the Risk of Exclusion
How ought public policy guard people with disabilities against these risks? Skeptics might view these alleged threats as vague and hypothetical--the creation of self-appointed rights advocates and their allies among bioethicists. After all, the chief portent of the new genetics for people with disabilities and for their potential offspring is amelioration. An understanding of the biochemical mechanism that leads from the Huntington's chorea and cystic fibrosis genes to their phenotypic expression is, first and foremost, an opportunity to devise a cure or palliative, extending lives and heading off the first symptoms of serious disease.
Secondarily, these advances in science offer sufferers from these conditions some hope, however distant, of bearing children without worry about bequeathing to them a painful and life-threatening condition. How many would-be parents have remained childless for fear of passing on a dreaded family condition? And how many of these people regard the lack of children as a tragedy almost equal to the diseases themselves?
In comparison to the prospect of having biological children who are healthy, and perhaps of beating back the genetic disease for yourself, the rather abstract worries we have described here might understandably draw an impatient response. Every advance in medicine and science creates waves; if the benefits are great and the undesired side-effects diffuse and difficult to measure, should society put up the green light?
We side, in the end, with the skeptics on this issue. Genetics should not be held back out of general fears for the plight of people with disabilities. The gains are too great. More important, in regard to social justice, there are some steps that can be taken to counter the potential effects on people with disabilities.
The concern that the genetic ghetto will further marginalize people with disabilities can best be countered by vigilance against the creation of this ghetto. The ghetto would be bad for hitherto "normal" people, and doubly bad for people with disabilities, which is reason enough to strive to prevent its construction.
We recognize that this necessarily implies that some societal benefits will be forgone. For example, privacy laws help the individual in some ways but interfere with commerce and even with public health. And genetic registries that might be used in construction of ghetto walls are first justified by their real potential for catching criminals, clearing the unjustly accused, and identifying fallen soldiers. In each instance, the case for securing the immediate gain may seem stronger than the case for vigilantly combating the ghettoization of those with "problem" genes. This kind of social contest is familiar, however, from such arenas as First Amendment guarantees of free (if harmful) speech and civil liberties generally.
What of the three less tangible concerns of people with disabilities? Jonathan Glover (198x) relates the story of a bright undergraduate afflicted with cystic fibrosis who says, when spotting on his bookshelf a government report on genetic screening, "that's the book that says that I should never have been born." It would be facile to dismiss this concern as that of an hypersensitive adolescent. The chief form of implementation of the "therapeutic" advantage of genetic screening has been that of avoiding the creation of afflicted children, rather than curing or ameliorating the condition of afflicted children. In this respect, genetics has differed from the other medical sciences. A cancer patient who encounters a medical volume on cancer screening can only wish that the book had been written earlier, so that this individual could have benefitted. But if the book on Glover's shelf had been on hand earlier, this undergraduate would not even exist.
What should be the response of public policy? To some extent, the choice between screening and therapy is not either/or: the same genetic advances that locate a gene and permit screening also point out the direction for research on mechanisms and treatment. And the two approaches should not have to compete for the same funds if initiatives in either vein are independently worthy of public support.
This aside, however, the choice between screening and therapy is in part a decision to serve prospective parents versus affected individuals and their families. This kind of divergence of interests is not uncommon among advocates for individuals with disabilities or diseases. Grass-roots advocates for mentally retarded people, for example, are sometimes viewed as siding with parents and against the wishes of these people themselves in a variety of program choices, such as the maintenance of institutional living facilities. Thus the fact that some people with disabilities will hear a hostile message contained in the very idea of screening programs is not in itself a weighty argument against these programs.
It is not necessary to demonstrate that the programs are in the interest of persons with disabilities or the category of people with disabilities as a whole. If they serve the legitimate interests of others--prospective parents, including disabled prospective parents, and the community as a whole--then a better response to the perceived hurt is through the kind of disabilities rights advocacy that is already practiced, aimed at bolstering the self-respect of people with disabilities, raising the consciousness of the public about what it is to have a disability, and exposing the extent to which disabilities are socially constructed.
In sum, the status of people with disabilities as valued and equal members of the community can be enhanced through familiar advocacy and policies; there is no need to take the extreme step of refusing to offer prospective parents the chance to have children unaffected by diseases they consider very burdensome.
The last of the concerns for people with disabilities dealt with in this book is the possibility that the boundary between them and fully functioning members of the community will be redrawn as genetic interventions bestow higher levels of functioning on some people--particularly if the lucky ones are those who can afford these benefits, and who would presumably also be enjoying the other advantages and opportunities that money can buy in our society.
At present, this risk is quite speculative. There are no memory-boosting genetic therapies that could reduce the relative cognitive status of the average person to the level of the mentally disabled. But in the long view, this is entirely possible, and we believe that it would be an injustice worth guarding against. Describing this as a matter of unjust inequalities among those who are effective participants in the most important forms of social cooperation fails to appreciate the nature of the problem. As with other issues in the realm of disability rights, what is at stake here is nothing less than the opportunity to be an effective contributor in social cooperation.
Again, we do not believe it is a favor to people with disabilities as a group, let alone to other members of society, to hold back genetic therapies, and even genetic enhancements on this account. People with disabilities have more to gain from these techniques than others do, since their deficits, real and perceived, serve to marginalize and exclude them.
In keeping with our general policy-guiding principles, we urge maximum progress in developing the genetic techniques and safeguards against exclusion. In this case, public policy should try to ensure that the benefits of genetic therapy and (particularly) enhancement are not distributed along class lines or selectively to those who already enjoy greater opportunity. Though we do not rule out the usefulness of these techniques even to the highest-functioning, most-able members of the population, the (perhaps unintended) risk of "disabling" already-vulnerable fellow-citizens by raising the ante on abilities needed to participate fully in society can be avoided by steps adopted toward that end.
Future public policy should put particular emphasis on ameliorating the condition of those who now have disabilities, thereby reducing inequalities in functioning, and should continue and extend present efforts to extend full participation and community membership to people with disabilities, erasing as far as we can the social disadvantages placed, without real necessity, on individuals with physical and cognitive limitations.
In sum, we concur with much of the substance of the disabilities rights critique of contemporary social institutions. We agree, moreover, that in some respects the advances promised by the genetic revolution threaten to exacerbate these problems. It is understandable that an affected person would suspect that, once screening programs came on line, those unaffected would regard people with disabilities as one of society's mistakes, and that affected individuals would perceive the programs as expressing disvalue for those of their kind, and perhaps thereby increasing the stigma associated with their condition. However, we do not share the view that these are inescapable interpretations and results of genetic advances.
We believe that the optimal response is not to retard the development of the techniques but to work to change the social conditions in which these advances might have the unfair results that disabilities advocates understandably fear. The problem lies not in our genes, but in their interpretation on a social level. One way we can resist the genetic determinism that constitutes part of the threat of greater discrimination is to demonstrate that we can, as a society, accommodate genetic advances while integrating, rather than marginalizing, people with disabilities.
VI. State, Society, Individual, and Markets
The Threat of the Eugenic State
In Chapter One, we argued that eugenics as a social program is not necessarily statist (though history instructs us that the worst excesses of the movement were fueled by the power of the state). Eugenicists can and have argued in favor of the proposition that betterment of the race is a civic duty that each person should take seriously, but one that ought not be imposed on the unwilling by an activist regime.
Still, the notion of eugenics as involving an intrusive state intent on overriding very private reproductive decisions persists, because mainstream eugenics often indeed did favor such policies. Without the power of the state, the eugenics movement would not cast so dark a shadow. As already noted, historian Diane Paul has argued that eugenics, at least in its old form, is unthinkable at present (at least in the United States) in large part because reproductive freedoms are deeply entrenched in our legal and political culture. If anything, the trend is to grant even wider scope for self-determination, extending to the new reproductive techniques (Robertson 1995).
Eugenics as a Moral Obligation?
With the relatively minor exceptions noted in the preceding chapters (and repeated below), we support a rather expansive understanding of reproductive freedoms. Protecting these freedoms calls for legal authority over decisionmaking to be vested in individuals contemplating reproduction.
However, one can be free to do that which one ought not to do. In making reproductive choices, as in deliberations generally, the interests of our fellow-citizens, including members of generations yet unborn, are properly given weight by each person even when at liberty to make self-interested decisions which might conflict with general obligation to augment the well-being of others. With the few exceptions we have noted, the individual should be permitted to disregard the interests of third parties, including those yet unborn, since this privilege comes with the reproductive freedoms. This does not, however, imply that individuals should do so, and it may be appropriate to direct moral criticism at those who do.
It might even be good public policy for the state to encourage this kind of moral thinking. By way of analogy, Ronald Bayer (1989) has argued strongly both for rights of privacy for people at risk for AIDS and also for a strong, binding moral obligation not to behave, under protection of these rights, in a way that would endanger others.
Here our account has a common point of reference with the old eugenic program. The well-being of future generations ought to figure in people's moral calculations, but this kind of consideration is absent from contemporary civic education. It is easy to understand why. The disgrace attached to the eugenic movement and its Nazi manifestation is explanation enough: we risk invoking these terrible precedents if we so much as whisper that we expect the interests of descendants to be considered in reproductive decisions.
Perhaps this fear is justified, but we are unaware of any determinative argument that it is. Should it really be assumed that once we revive the eugenicists' admonition to consider the effects of our reproductive decisions on our descendants, we will also have to deal with much of the rest of the eugenic program?
Just as significant is the fact that the reproductive choice facing prospective parents today is not necessarily whom to marry, or whether to have children (virtually the only decisions that eugenicists could hope to influence), but which of our gametes will produce our own children--a choice exercised, as discussed earlier, in the context of both in vitro fertilization and post-conception termination of pregnancy.
The result of both these changes is that less is asked of prospective parents when they are encouraged to consider the interests of society, future and present, in making reproductive decisions. It may still be possible to have biologically-related children even while guarding against harmful transmission, and people need not fear reproducing their own kind because their ancestors (or they themselves) may have been "shiftless," "feeble-minded," or "criminal." These considerations weigh against the fear that suggesting that prospective parents take the interests of future generations into account in making reproductive decisions is tantamount to reintroducing the entire regime of sweeping, scientifically unfounded programs of state control of reproduction for the most vulnerable parts of the population.
Presumably the genetics revolution will, in the more hopeful scenario, replace the vague and sweeping prescriptions of the old eugenics movement with more specifically targeted directives to be concerned about specific genes. Nevertheless, an argument can be made that in this new era there will be even more reason to pause before urging recognition of an obligation to protect future generations in reproductive decisions.
The Human Genome Project and related research will yield a huge increase in the number of genetic conditions that can be tested for and hence that we can worry about transmitting to our heirs. Propensities to disease that in the past were vaguely believed to "run in the family" will be known, with some certainty, to do so, and the route of these genes will be traced to the specific shoots of each branch of the family tree. And numerous genes will be discovered that we may never have contemplated, let alone guessed of their presence in our own genomes. Each of us will stand revealed as a Typhoid Mary many times over, bound to pass along dangerous or undesirable genes in each and every reproductive act. The fact that every other person is in a similar position may be some consolation, but does not remove the dilemma.
Even if an obligation not to burden future generations with undesirable genes is taken seriously, it is obvious that reproduction will not grind to a halt. Indeed, morally serious people may welcome the chance to make informed moral choices about gene transmission, choices made blindly before the advent of the new genetics. Nevertheless, the drawbacks of this opportunity are already apparent. The possibility that screening will one day be accomplished by examining fetal cells in maternal circulation, a development just on the horizon at the time of this writing, presents the prospect of easily accomplished mass screening for any number of traits, exposing large numbers of parents not only to choices but also to possible social pressure to make those choices in socially approved ways. Eugenics thus enters through the "back door" rather than by state decree (Duster 1990).
Though reproductive freedom is unlikely to be undermined if a (relatively) few people with particularly dangerous or undesirable genes are alerted to their carrier status and alter reproductive decisions as a result, a comprehensive turn toward calculation of and due consideration for the genetic future in each person's reproductive decisionmaking might have a destructive result. Moreover, the parents' generation would not be the only losers.
We bequeath to future generations not just our genes but also our patterns of family life and our sense of what matters when deciding whether and how to have a child, just as we bequeath our commitment to reproductive freedom. To the extent that this heritage is valuable, it may offset some drawbacks denominated in genes, deficits in transmitted genes relative to what a more determinedly eugenic society might offer its descendants. We describe this dilemma not because we hope that people will willfully ignore the long-term effects of reproductive choices, but to point out a general reason for caution in advocating state action to heighten public commitment to this end.
Eugenic Public Policy?
We have affirmed our support of broad and comprehensive freedom in reproductive choice C protections and liberties that, had they been in effect during the early decades of this country, would have gone a long way toward countering and forestalling the worst eugenic abuses. But this by no means exhausts the subject of a eugenic role for the state.
The state can respect the right of individuals to reproduce without any concern for the genetic consequences of their acts for future generations, but it may also seek to encourage responsible choices. It can provide information that would likely be factored into these decisions, and it can provide the means (including genetic tests and assisted reproduction) to make possible reproductive acts that are likely to result in the transmission of the most desirable genes. The state can also seek to foster a climate of opinion in which these issues will be seriously considered and in which public attention is directed to the distant consequences of present-day reproductive choices.
Though these initiatives carry the risk that "facilitation" would soon become pressure, there is no inconsistency between advocating that the genetic welfare of future generations be given due consideration and a genuine commitment to free individual choice, which can also be enhanced by state measures. Indeed, as we note below, the need to enhance reproductive freedom specifies a continuing need for state action in genetics.
The state, in our view, does have a legitimate role as guardian of the genetic well-being of future generations. Though it is not currently popular or common to say so, we find the prima facie case for genetic stewardship as persuasive as the that for a state role in conserving nonrenewable resources, in ensuring that savings rather than deficits are our descendants' financial inheritance, in engaging in basic research in science and medicine with very long-term payoffs, and in affirming that our waste products do not have the potential to become toxic in the centuries to come.
If concern for our genetic future were expressed in terms of a determination to rid the land of radioactive wastes that might cause harmful mutations, few would take exception. Such an initiative would be regarded as an environmental safeguard, which it is, but it also involves a eugenic role for the state--and properly so, in our view. Indeed, just as the state is the principal agent acting in the interests of future generations in such fields as land and resource management, so too does a eugenic role for the state, if needed, fit into the standard categories of legitimate areas of concern for government.
Nevertheless, under conditions presently foreseeable--absent, say, a nuclear event whose radiation threatened the entire human genome--we find no need for an activist state eugenic policy. We base this claim on three premises, two of which have already been elaborated: the very general alignment of individual and social interests regarding reproduction, and the lesser burden of eugenic practice due to advances in genetic science and technology. The third premise is that, for the foreseeable future at least, humanity is facing neither a "crisis of degeneration" calling for strong state action to avert disaster nor an opportunity to make large-scale and significant enhancements in human beings through the use of genetic technologies.
Since there will be neither an urgent need for remedial eugenic action nor an opportunity for gainful eugenic intervention by the state in at least the near future, there is no need for a rededication of the state to any comprehensive eugenic program. There is a "soft eugenic" alternative, however. Philip Kitcher (1996), in his advocacy of "Utopian Eugenics," recalls the emphasis of George Bernard Shaw and his circle on public education and encouragement, a much more acceptable eugenics than the genetic search-and-destroy missions carried out in U.S. mental institutions and German racial hygiene clinics.
On our view, however, there is at present little need even for this mild campaign, let alone more stringent measures. Our remarks on the need for a hugely expanded program of genetic services, together with the privacy protection and insurance regulation needed to integrate these services into the mainstream of medical practice, point toward policies that would have much of the same effect, and without a hint of coercion. Education about genetics (rather than eugenics) both in the schools in the news media can alert the public to the possibility of heading off avoidable genetic harms.
There might be further avoidance of tragedy (and, of course, expense) were the state to undertake eugenic education on a broader scale, but the residual burden may be the price society should expect to pay to avoid any return to the sorry historical record of the eugenics movement. It will be difficult, in the best of circumstances, to avoid slipping from a utopian vision of genetically healthy children to a much less savory attitude which holds that some people are much more valuable than others.
Contrary to Galton, we see neither the need nor the benefit of enshrining eugenics, conceived here narrowly as concern for the genetic constitution of future generations, as a public religion or anything close to it. Again, Galton's outlandish proposal stemmed from the fact that individuals would, in his view, have to be furnished with eugenic motivation adequate to overcome one of the strongest of human desires--the wish to bear genetically related offspring. Since this is neither necessary nor desirable at present, it is unnecessary to create a Eugenics Church, even if it is not the state's established religion. Our argument applies with even greater force against any thought of state action that would violate hard-won reproductive freedom, as would sterilization or forced abortion, on the altar of eugenics.
These conclusions are the result of a weighing of benefits against short-term burdens and long-term concerns. As such, they might not yield a judgment which would apply equally well to other societies and to special contexts. The Orthodox Jewish communities which make use of the genetic services of Dor Yeshorim, described at the outset of this chapter, are well aware of the historical ironies involved when a Jewish group seeks to prevent the conception of certain individuals because of the genes they might have. Concerns over reviving the ideology which once threatened these communities with extinction, however, have been outweighed, in the judgment of those concerned, by the high concentration of the genes in question. Moreover, the manner and extent of intervention involved is tolerable to a community which maintains such traditions as arranged marriages (Rosner 1997).
China's "Law on Maternal and Child Health Care", also discussed above, has been defended as necessary in light of China's stringent curbs on population growth, which permits most Chinese families only one child. This limitation, defenders of the law have claimed, turns the attention of parents and the nation to Aquality@ as well as to quantity. While the details of China=s law, and the circumstances of its actual implementation, are unclear as of this writing (Qiu 1998), our impression is that even the special circumstances of China do not necessitate or justify the coercive requirements of the most controversial provisions of this law. Again, we view the occasional parental choice which might result in a net burden on society to be a price worth paying both for reproductive freedom and for maintaining and affirming the principle that each life is valuable.
Markets and Individual Liberty
Though we have endorsed the idea that concern for the genetic well-being of future generations is a proper function of the state, we have endorsed a policy, at least for the near term, of relative inaction. Our conclusions thus might seem to tally, in policy terms, with those who would reject any state role in this domain on more fundamental grounds, as an illegitimate extension of state authority and use of common resources.
On the contrary, we believe that the needed counterweight to the market is the state, acting both to regulate and, through taxation, to provide services. Together, these considerations indicate a significant role for the state in genetic policy, and we believe that a just society will need this kind of government intervention.
We have noted Robert Wachbroit's argument that the state has switched sides in the eugenics debate: once the spearhead of "racial improvement," governments in the Europe and North America now sponsor studies of ethical problems created by progress in genetics, and enact laws seeking to prevent discrimination against those with disfavored genes. The current risk of the grosser forms of exclusion of large numbers of people may be low. Evidence of exclusion from health insurance and employment is anecdotal (Billings 1992). Nevertheless, the potential for exclusion is great. As the cost of genetic tests falls and their accuracy increases, the temptation to use them to identify high-risk individuals will become stronger.
It is no secret that many of the virtues of markets, from the point of view of some participants, are simultaneously vices from the point of view of social justice. We have spoken of the fact that predictive information on predispositions to disease segments a society that had previously been united in a shared vulnerability by ex ante uncertainties. Markets permit the lucky, less vulnerable participants to detach their fortunes from those of their unlucky fellow-citizens--a boon for those who can buy insurance at lower rates or who obtain jobs denied to those marked as genetically compromised, but also possibly (and, we believe, unjustly) disastrous for those adversely affected.
This fracturing of the common good will be exacerbated by the fact that genetic predispositions to disease are sometimes predictive of events long in the future, creating in effect a permanent divide between the unlucky individual and the rest of society, to the extent that markets permit people to detach their fortunes from those identified as genetic risks. When the goods secured by markets in genes are positional, as would arguably be the case with increased height for children, advantages won by some are by dint of logic disadvantages imposed on others.
State action to regulate markets as they distribute the fruits of the genetic revolution is necessary also for reasons familiar from other medical and scientific fields. Consumer protection of the sort provided in the United States by the Food and Drug Administration is needed for such services as genetic testing and screening on behalf of individual patients. Improperly performed, these tests can be as destructive as a dangerous drug or medical device. False positives for breast cancer genes may prompt useless mastectomies in young women; false negatives for predispositions to serious disease might provide unwarranted peace of mind to individuals who, properly alerted to their condition, could take steps to remain healthy.
The apolipoprotein-E gene test, which provides some subgroups of the population with a range of much higher than average probabilities of developing Alzheimer's dementia, presents a different set of considerations. Its results, for some individuals, may be less difficult to interpret, but nothing whatever can be done to head off dementia. Suicide attempts have been occasioned by positive test results. The point is not to ban these tests, but to ensure that their use is not simply governed by supply and demand.
The medical profession in the past exercised paternalistic control and protection of patients, for better and for worse, without any explicit mandate from the state. It might not play the same role in genetics, in part because of the direct financial participation by researcher-clinicians in genetic technology firms, and also because of the relatively poor understanding of genetics of many primary care physicians today. At a minimum, the state can encourage the medical profession to reflect on its appropriate role in protecting patients from unwise and hasty use of genetic tests and other genetic technologies by fostering the development of professional task forces on these ethical and clinical issues and the production of practice guidelines.
Genetics and markets are linked not only on the demand side, through consumers, but on the production and supply side as well. Walter Gilbert, the Nobel laureate molecular biologist, has stated that not one prominent scientist in his field lacks financial ties to biotechnology companies (Gilbert 1992). This intermingling of basic science and venture capital is particularly problematic in a field that produces products that affect not only current lives but, potentially, generations unborn.
The introduction of constitutional changes in the genome by a commercial, competitive process that divides the population by risk category and that is immune from collective decisionmaking and even public review is morally troubling (Dutton 1988). The concentration of authority in genetics in the hands of investors and executives in biotechnology companies gives a small number of people the ability to decide the direction of innovation and the conditions under which genetic services will be offered. These companies of necessity have a short-term orientation, which may slight valuable basic research, and profitability may hinge on successfully inducing demand (Dutton 1988; Culver 1995). Given the public's lack of understanding of genetics and genetic causation, and the seriousness of diseases linked to defective genes, the road to profit can lie through stimulating public fears.
Finally, state intervention in the market for genetic services is justified in some cases out of concern for future generations. We have mentioned the few restrictions we believe should be placed on prospective parents in making reproductive decisions, primarily those needed to secure their children an "open future." To the extent that this entails regulating and restricting markets for professional services, we believe this to be a proper state function.
Though we have endorsed a policy of benign neglect in pursuit of eugenic goals, both on the grounds that individual choices will tend to promote these ends anyway and that the tradition of individual liberty is itself a valuable legacy for future generations, unforeseen changes in genetic technology could alter this judgment. Discoveries of methods for delivering great benefits to future generations, particularly in prevention of disease but also conceivably in enhancement of skills and capacities useful in pursuing a broad range of plans of life, might create a prima facie case for government intervention, particularly if the intrusion were small and a laissez-faire approach could not be made to work.
We have presented a somewhat dialectical argument on the role of the state in genetic policy. Though our support is hedged in several ways, we do not reject the thesis that stewardship of the gene pool in the interests of future generations is an appropriate role for the state. And we have argued that recognition of this role is not incompatible with a proper respect for reproductive freedom in particular and for liberty generally.
At the same time, the terrible actions of governments in this century in the name of eugenics are warning enough to attach the highest importance to individual liberties. With minor exceptions, individuals should make their own choices regarding reproduction and treatment, and there should be no retreat at all from the strong body of law and policy that presently protects these liberties in the United States and comparable countries. We are fortunate in that the general alignment of interests between parent and child also aligns the reproductive decisionmaker toward ends that are eugenic in the narrow sense of favoring the propagation of genes conducive to human well-being in future generations.
It is crucial to emphasize, however, that our support of individual liberty over state compulsion of the sort encouraged by the public health model does not translate directly into a brief for unregulated markets or an endorsement of the unalloyed personal choice model for genetic intervention. "Back-door eugenics" threatens individual liberties and well-being in a manner reminiscent of state eugenics programs, even if this outcome is the unintended effect of private decisions made on grounds of self-interest. The state must intervene as needed to protect the vulnerable from stigmatization and exclusion, as social justice requires, even though these interventions necessarily abridge the benefits that markets can provide to many.
Moreover, individual choice in some cases requires state intervention, since effective choices cannot be made without state subsidies and regulations ensuring access to services. Prospective parents need information and counseling, and may need clinical services to act appropriately on this intervention, and a policy oriented toward the individual as decisionmaker cannot ignore the need for state aid as well as state neutrality. And in light of the far-reaching effects that a market for genetic services can have, the state ought to act in its role as steward of resources and protector of future generations to ensure that genetic interventions are not based only on the prospect of short-term profit accruing to particular firms.
Liberal Neutrality and Democratic Decisionmaking
Thus far we have seen how the fruits of our analysis provide moral guideposts on the journey toward ethically sound public policy for a society with significant powers of genetic intervention. We have noted how reproductive freedom, the requirements of equal opportunity, the most basic obligations of inclusion, the child's right to an open future, and the obligation to prevent harm impose both negative and affirmative duties on the state and thereby shape the character of ethical public policy.
Our focus has been on the just society, not the good society. Yet in a pluralistic society such as ours, where no one conception of the good can be taken for granted, the public policy debate is not confined to rival conceptions of justice, nor is it limited to the prevention of harm. It is also the arena with competing conceptions of the good society.
Even if the demands of justice are fully met and both individuals and society have met their obligations to prevent harm, there would still be room for further public policy choices that would affect the character of society. The extent of this residual domain of public policy choice concerning the good society will depend on how robust the requirements of justice and the obligation to prevent harm are assumed to be. It will also depend on whether or in what sense the state ought to maintain a posture of neutrality with respect to competing conceptions of the good.
A familiar slogan of liberalism asserts that the state must observe a principle of neutrality. There is considerable controversy among liberal theorists, however, about the appropriate notion of neutrality (Kymlicka, 1989). Perhaps the most plausible interpretation is what is called "neutrality of justification": the power of the state must not be used to pursue policies whose justifications depend on the assumption that certain substantive conceptions of the good are superior to others.
This conception of state neutrality appears to allow considerable space for public policy directed toward furthering a particular conception of the good society through the use of genetic technology or otherwise. If, as a result of fair democratic processes, legislation designed to pursue a certain ideal of the good society emerges, there should be no assumption that this ideal has been authoritatively pronounced to be superior, and hence there is no reason to conclude that the requirement of neutrality in justification has been violated. All that follows is that this ideal commands--for the present--the allegiance of the majority of voters.
It is, therefore, simply a mistake to assume that in carrying out democratically derived policies, the government or society is taking a stand one way or another on the justifications that the proponents of those policies advance to gain majority support for them. In that sense, the only public justification for democratic policy decisions is that they have been made democratically; hence the question of neutrality of justification simply does not arise.
The same point can be put in this way: once the requirements of justice have been met, the outcomes of democratic processes are to be understood simply as expressions of preferences. Thus the justification for a public policy designed to further a certain conception of human improvement--assuming it operates within the bounds of justice--is not that the conception of the good it uses has been pronounced to be superior by the state, but rather that it is what the majority has chosen.
In principle, there is nothing more (or less) problematic about a public policy directed toward implementing a certain conception of human improvement through genetic means than there is about a policy of enriching the cultural opportunities of citizens or of building beautiful parks. In both cases, proponents and opponents of the policy may mistakenly assume that what they happen to value is objectively valuable, but this neither disqualifies them from attempting to gain democratic support for their projects nor bars the state from implementing their projects if they succeed.
The Permissibility of Rights-Respecting Genetic Perfectionist Policies
Through its democratic processes, a liberal society could decide to devote resources to the continual enhancement of desirable human characteristics--to embark on a process of genetic perfectionism--so long as in doing so it did not compromise its commitment to justice and the prevention of serious harm. Such a policy need not infringe on individuals' reproductive freedom, for example, if it only encourages rather than coerces or unduly pressures prospective parents to use enhancement technologies.
In other words, a just society of substantial powers of genetic intervention might have a public policy of eugenics in the broadest sense of that term--an effort to apply genetic science to the improvement of human beings. Alternatively, individuals and groups may, without transgressing liberal principles, work through the democratic process to try to block the efforts of others to further their conception of the good, either because they endorse a rival conception of the good, or because they think the enterprise of genetic perfectionism is unwise or wrong.
Earlier we argued that it is not plausible for public policy to draw a bright line that allows individuals to use genetic technology for treatments but prohibits them from choosing to undertake enhancements. We have now reached a parallel conclusion for collective choice: there is no basis for a blanket prohibition of any public policy initiative designed to promote the use of genetic technology for improvement rather than just for the prevention of disease or disability.
The term "eugenics" may, if some get their way, be expunged from public policy discourse, but it is unlikely that we can avoid further debate about the wisdom or folly of collective efforts to use a knowledge of genes to improve humankind in the decades to come. We thus end this exploration of the ethics of genetic intervention where we began it--convinced that society can best prepare itself for the future not by reflexively dismissing the idea of improvement through genetic means as an unfortunate mistake of the past, but by reflectively exploring it with the aid of our best ethical thinking.