CHAPTER SEVEN: GENETIC INTERVENTION

AND THE MORALITY OF INCLUSION

I. Objectives

The Morality of Inclusion

So far this volume has examined ethical issues concerning how, when, and by whom genetic intervention technologies should be employed. Until now the tacit assumption has been that the project of using genetic science to improve human lives is not only ethically permissible, but laudable. The present chapter articulates, analyzes, and evaluates an arresting critique of this basic assumption that has been advanced by some members of the disabilities rights movement. Addressing the radical disabilities rights challenge will reveal how the prospect of advances in genetic knowledge and genetic intervention pushes the limits of ethical theory by raising profound issues about what we referred to in Chapter Three as the morality of inclusion.

These two objectives are intimately related. The critique by disabilities rights advocates is a profound challenge to the reassuring assumption that the new genetics avoids the exclusionary features of the eugenics movements that were noted in Chapter One. The concept of the morality of inclusion provides the key to articulating the various dimensions of exclusion and understanding their moral significance.

At the deepest level, a theory of the morality of inclusion would articulate criteria for membership in what might be called the primary moral community, specifying the characteristics that individuals must have in order to qualify as worthy of equal consideration and respect. Such a theory would also delineate the scope and limits of our obligations to include other individuals or groups in various mutually beneficial cooperative arrangements and hence make them eligible not only for the concrete benefits of participation in those arrangements, but for the status of equality that is accorded to those who stand in relations of reciprocity with one another.

Here the concept of a cooperative framework, which we introduced and expanded upon in Chapter Three, is of critical importance. The term covers a wide range of structures within which cooperation can occur, from the internal organization of business firms to the most basic institutions of a society. In the U.S. and other 'developed' societies the most basic cooperative framework consists, to a large extent of the competitive market system. The more fundamental and pervasive a cooperative framework is in a society, the more debilitating it is for an individual if he or she cannot participate effectively in it. In some cases, the gap between the capacities an individual possesses and the requirements for participation in the cooperative framework is so wide that it can be said, without much exaggeration, that the individual is excluded from participating. In most cases, however, exclusion is not total; intead, there are limitations of varying degrees of severity upon the effectiveness with which an individual can participate.

Individuals may be unable to participate effectively in a framework for cooperation in several different ways. Hence different strategies will be required for overcoming exclusion. If existing law excludes certain people, we can fulfill our obligations of inclusion by changing the law, allowing those who have the requisite capacities to participate in our cooperative endeavors to do so. But in other cases there is a mismatch between what the cooperative framework demands of participants and the capacities of some individuals. Even if they are not legally prohibited or otherwise actively barred, they cannot participate effectively. Some cooperative frameworks are more vital for a person's prospects, interpersonal relationships, and self-esteem than others. When a mismatch between a person's abilities and what may be called the dominant cooperative framework of society occurs, the results may be devastating.

When this happens, a theory of the morality of inclusion should be able to tell us whether and to what extent we are obligated to undertake efforts to enable those individuals to participate. This could occur either through changing the cooperative framework so that its demands do not exceed their capacities, or through enhancing their capacities so that they can meet the demands of the cooperative framework.

An adequate theory of the morality of inclusion would answer at least three questions: Which beings qualify as members of the primary moral community? Under what conditions are participants in a cooperative framework obligated to include individuals who can participate effectively? And to what extent is there an obligation to ensure that the nature of society's most fundamental framework for cooperation renders it more rather than less inclusive? (More generally, to what extent should our choice of frameworks for cooperation be guided by a commitment to making more individuals able to participate effectively in them?)

This question is of crucial significance not only because whether an individual can participate effectively in the dominant cooperative framework will have dramatic effects on his life-prospects for tangible social goods such as income and access to rewarding occupations. In addition, and in some ways more importantly, those who are excluded from participation in the dominant cooperative framework are relegated to the inferior status of dependency. They are not regarded, and tend not to regard themselves, as fully equal to those whose relationships with one another are characterized by the reciprocity that binds together active participants in the dominant cooperative scheme. Instead of being regarded as fundamentally equal subjects of relations of justice, they may be regarded as objects of charity.

Neglect of the Morality of Inclusion in Ethical Theory

Traditional and contemporary ethical theories have frequently grappled with the question of who qualifies as members of the primary moral community, with different theories offering different criteria. (Kantian theories focus on the capacities required for rational agency; utilitarian theories require only sentience--the capacity for pain and pleasure.) The other two questions about the morality of inclusion have rarely been addressed, however, in a systematic manner, and in many theories are never explicitly raised at all.[1]

Whether an individual is able to participate in the most basic cooperative framework of society usually determines the share of social wealth to which the person has access. Hence it would be assumed that theories of distributive justice would address issues of inclusion. But theorizing about distributive justice often proceeds on a simplifying assumption that obscures the third question: namely, that the basic framework of social cooperation is one in which all or most individuals who are members of the primary moral community are able to participate effectively (Rawls in Amartya Sen and Bernard Williams 1982 and Rawls 1993). Given this assumption, the fundamental problem of justice is taken to be, How are the burdens and benefits of social cooperation to be distributed among the members of a society considered as participants in one basic cooperative framework?

Unfortunately, what most theorists of justice overlook is that proceeding in this familiar way slides over a prior question of great significance: How does the choice of a cooperative framework influence who will be able to participate effectively in that effort? Given their capacities, some individuals will be able to participate effectively in some frameworks but not in others. Choosing a framework for cooperation will amount to choosing who will be disabled--unless special efforts are made, through genetic intervention or otherwise, to achieve a match between the demands of a cooperative framework and the abilities of all individuals. As the new genetics increases our control over which abilities individuals will have, this third question of the morality of inclusion becomes more pressing.

The Allegation That the New Genetics is Exclusionary

Some of the most passionate criticisms of the new genetics come from those who claim that efforts to use a knowledge of how genes work to cure or prevent disease and disability is exclusionary. For these critics, efforts to draw a clear line between the old eugenics and the new genetics obscure a sinister shared characteristic: both promote exclusion, rather than inclusion.

The old eugenics excluded "defective" individuals from the primary moral community, branding them as dangerous carriers of inferior germ plasm who threatened humanity with moral and physical ruin. The new genetics is seen by some members of the disabilities rights community as a tool for excluding individuals with "bad genes" not only from particular tangible benefits such as insurance and employment, from the most basic good of all--the equal respect and consideration that are owed all members of the primary moral community--and even from life itself through selective abortion. In addition, some advocates for the rights of persons with disabilities charge that the effort to develop more sophisticated capacities for preventing genetically based disabilities is fundamentally misguided: instead of changing individuals to fit society, we ought to change society to accommodate individuals.

All these complaints about the allegedly exclusionary character of the new genetics can be subsumed under the three questions that a theory of the morality of inclusion ought to address. The remainder of this chapter concentrates on the second and third concerns about exclusion: the complaint that the effort to use genetic science to eradicate diseases and disabilities denies those with "defective" genes their status as persons entitled to equal moral worth, and the charge that instead of attempting to eliminate disabilities by changing individuals, the goal should be to change society so that the genetic conditions some individuals have are not disabling.

The more obvious and tangible issue of exclusion--the risk of genetic discrimination in insurance and employment--will not be the focus of our inquiry. This topic has been exhaustively examined elsewhere (Capron 1997; Rothenberg 1997). Our emphasis will be on what we take to be more subtle yet more basic issues of exclusion that the new genetics raises and with its tendency to push the limits of ethical theory.

Before proceeding to what we take to be less obvious dangers of exclusion, however, it may be useful to emphasize one point that has not received sufficient attention in the public discussion of employment and insurance discrimination on genetic grounds.

That point is quite simple, but important: Unless something is done to eliminate the threat of widespread genetic discrimination in employment and insurance, the chief public justification for using tax monies to finance the Human Genome Project and related genetic research will be discredited. That justification was that public monies were to be used to benefit the public. If the knowledge that this infusion of public funds produces is systematically used to the disadvantage of citizens at higher genetic risk for certain diseases, then it cannot be said, without serious qualification, that these public funds are being used to benefit the public. Instead, at most we can say that they are being used to benefit some members of the public and to harm others.

Furthermore, if individuals are able to avoid insurance or employment discrimination only by not being tested for genetic conditions (which is now often the case), then they will not benefit from the knowledge that the public's support helped to create (even if they are not harmed, as they would be if they were tested and then suffered discrimination as a result). For those who might benefit from genetic testing but are afraid to avail themselves of it lest they suffer discrimination, all the fine rhetoric about the need to support genetic research so that "we" can gain knowledge to better "our" lives will ring hollow.

II. The Public Promise of the New Genetics: Better Lives for All Through Medical Genetics

Nobel Prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as "the grail of molecular biology." Those who know Gilbert and respect his sophistication would no doubt hasten to point out that he does not in fact attribute supernatural powers to mastery of the sequence of base pairs that make up the total human genetic complement. They would plead that he ought to be forgiven for indulging in public relations rhetoric to garner support for the Human Genome Project.

Nevertheless, his choice of metaphors is revealing: the implication is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail of legend, will give us miraculous powers. Hyperbole aside, such rhetoric seems to appeal to the best of the Western tradition's zeal for progress--the idea of improving human lives through the practical application of scientific knowledge. The search for the grail is a noble quest--the pursuit for the greater good of humanity as a whole, not a self-interested endeavor or an effort to achieve a benefit merely for some.

In other words, the rhetoric of the supporters of the Human Genome project and of genetic research generally is explicitly inclusive, in part no doubt to distinguish the new genetics from the exclusionary old eugenics. Genetic science is now to serve human beings generally, rather than any particular people or nationality or "race." Indeed, the very idea of the Human Genome Project appears to highlight what all human beings have in common rather than what differentiates them one from another: the human genome that is the object of an international network of mapping and sequencing projects is a composite, not the genome of any particular person or even a composite representing any one subgroup of humans.

Moreover, the official rhetoric has tended to equate the new genetics with medical genetics--the emphasis has been on the prevention and cure of diseases, rather than on the other uses to which genetic knowledge and technology might be put, including the enhancement of normal characteristics or the production of novel traits. One consequence of this emphasis on disease is to minimize the danger that the new genetics will be hijacked for the pursuit of those dubious ideals that were prominent in the racist eugenics of the past. In this sense, the official rhetoric of the new genetics is that of an inclusive, medical genetics.

Enthusiasts for the new genetics react defensively to any suggestion that current scientific endeavors harbor the taint of eugenics. After all, what could be controversial about the goal of improving human life through the application of a scientific knowledge of genes? Surely the difference between the old eugenics and the new genetics is unmistakable: the former was particularistic and exclusionary, condemning as defective all those who failed to meet supposed criteria of racial purity or human perfection; the latter is universalistic and inclusive, seeking to prevent suffering for all of humanity through the eradication of genetic disease. In addition, the exclusionary vision of the old eugenics was aided and abetted by faulty science, whereas the new genetics is truly scientific.

III. Challenging the Rhetoric: The Radical Disabilities Rights Advocates' Complaints

Where enthusiasts for the new genetics see inclusion and progress, some in the disabilities rights movement see exclusion and moral retrogression. The charge is that the very conception of progress that lies at the core of the ideology of the new genetics radically devalues individuals with disabilities, inflicting on them what may be the gravest injury of all--a denial of their equal moral worth and even their very right to exist.

The source of injury is said to be a fundamentally flawed conception of the value of human lives (International Association of Societies for Mental Disabilties 1995). Lives that include impairments are assumed to be without value if not a positive evil to be eradicated. Thus the disabilities rights advocates' view stands the new geneticists' claim to universalistic progress on its head. Not only is the alleged universalism indicted as exclusion, but also the very notion of progress is said to rest on a distorted view of the basic value that is supposed to guide the quests for progress. Scientific control over natural endowments will not mean improvements for all of humanity. Instead, it will result in harm to the fundamental interest of some human beings--those with disabilities.

The disabilities rights advocates' critique of the new genetics appears to be nothing short of a rejection of the basic idea of striving "to make human lives better by selection based on genetic knowledge." (Ibid.). "Selection" here includes not only choosing who will be born and who will not (through genetic testing and abortion to avoid the birth of individuals with certain conditions), but also choosing the characteristics of those who will be born by genetic interventions on gametes (sperm and egg cells) or embryos (fertilized eggs) to eliminate or counteract genetic influences that would cause disease.

Furthermore, the charge is not simply that the effort at improvement through selection in either of these ways is unwise or in some way morally questionable. The claim is that it is unjust--that it violates the most fundamental rights of people with disabilities and is nothing less than a degradation of the core of morality, the proper appreciation of the value of human lives. What is striking about the radical disabilities advocates' critique, then, is that it is directed squarely against medical genetics--which proponents of the new genetics have taken to be the most laudable and uncontroversial application of genetic knowledge. Taken at face value, this critique condemns any effort to eliminate disabilities through medical interventions, genetic or otherwise (though it is true that the radical disabilities rights critique has focused primarily on genetic intervention). For if taken literally the slogan "change society, not individuals" does not merely insist that try to make the social world more accessible to those whose impairments cannot be corrected; it would require accommodating those with impairments rather than using medical science to prevent or correct impairments.

Given the universalistic and progressive self-image of those who engage in or support the new genetics, this critique evokes incredulity and indignation. Indeed, it is tempting to dismiss the radical disabilities advocates' objections as hysterical, paranoid, or extremist. This, however, would be a mistake, as we shall see. For there is some truth in this critique. Humanity's emerging powers of genetic intervention do raise important and in some ways novel issues of justice and exclusion--issues the rhetoric of universal progress obscures. On closer examination, however, it will turn out that neither the disabilities rights advocates nor the enthusiasts for the new genetics have grasped the fundamental implications of genetic intervention for our understanding of justice, of the moral significance of disabilities, or of the morality of inclusion.

IV. Sorting Out the Concerns of Disabilities Rights Advocates

Several distinct objections can be discerned in the disabilities rights advocates' critique. Here we will concentrate on what we take to be the objections that strike at the heart of the legitimating rhetoric of the new genetics, those that challenge the claim that, at least so far as the application of genetic science is restricted to the prevention of disease, the new genetics is nonexclusionary and benign.

The Loss of Support Argument

Before proceeding to the most fundamental objections to the new genetics, however, we should note a different criticism of "improvement through selection" that is often voiced by those from the disabilities rights movement. This is the charge that as the application of genetic science reduces the number of persons suffering from disabilities, public support for those who have disabilities will dwindle. Although we discuss this "loss of support argument" mainly to distinguish it from what we take to be more fundamental objections, three points merit consideration.

First, the objection rests on a sweeping empirical generalization: that as the number of persons with a certain disability decreases, support for those who have that disability will decrease, and that this is true for disabilities generally. Without attempting to settle the empirical issue, we would only point out that it is not enough to state the generalization. Data to support it must be marshalled. To our knowledge, those who advance the "loss of support argument" have not borne this burden of evidence. Moreover, we do know of at least one instance in which a reduction in the incidence of a genetic disease (achieved through voluntary carrier testing) resulted in more resources being used to support the decreasing number of those who had the disease. This was the case of the Thalassemia testing program in Greece (Kitcher 1995).

Second, whether or not support will diminish in a particular case will depend on a number of factors, not the least significant of which is whether the public is alerted in advance to the danger of reduced support. In fact, the prediction that support will decrease as science reduces the incidence of genetic diseases is much less plausible today than it would have been twenty years ago, precisely because the disabilities rights movement has succeeded in awakening the public and policy makers to the need for support.

Third, even if there should turn out to be some loss of support for certain genetically based diseases as their incidence declines, it would not follow that seeking to reduce their incidence is wrong, all things considered. The most fundamental problem with the loss of support argument is that it only considers the interests of those who will have disabilities in a world in which disabilities are less common. It entirely neglects the legitimate interests that people have in not having disabilities. (In addition, as we argue later, this argument also fails to recognize that those who are not disabled and who are not at significant risk of being disabled can have legitimate interests in reducing the incidence of disabilities.)

Consider first the interest a person has in not having disabilities. Surely this is a morally legitimate interest. It is true that in some cases this interest is not relevant, because the disability is avoided only by preventing the existence of the person who would have been born with it. Obviously, in this case, one cannot justify the intervention by citing the interest some person has in not having the disability.

But there are other interventions that do serve the interest that individuals have in not having disabilities. For example, it will very likely become possible to correct some genetic anomalies by intervening on the embryo. In this case it will be correct to speak of preventing an identified individual from having a disability and to justify the intervention by appealing to that individual's interest in not having a disability. Similarly, genetic science will be able to prevent disabling genetic conditions in other, perhaps less dramatic, ways, not by manipulating the genes of embryos but by administering drugs that mimic the products of normal genes or that counteract the deleterious effects of abnormal genes. In these cases, too, we may correctly say that the application of genetic science makes identifiable individuals' lives better by preventing genetically based diseases, and that such individuals have a legitimate interest in avoiding the damage to them that would occur without the intervention.

Once it is recognized that the incidence of genetically based diseases may be reduced without preventing the birth of individuals who would have disabilities, it should be evident that the loss of support argument must be rejected. It fails to give any weight to the legitimate interests that individuals have in avoiding disabilities. This can be seen more clearly once we recognize that the general form of this argument has nothing peculiarly to do with genetic interventions. If the risk of loss of support is a reason for not undertaking genetic interventions, then it is also a reason for not undertaking conventional medical interventions as well. By this logic, it would be wrong to treat babies' eyes at birth to prevent blindness due to contact with gonococcus bacteria during vaginal delivery. But surely it is not only permissible but morally obligatory to prevent babies from being blinded, if this can be done safely and effectively, even if it could be shown that there is some significant risk of loss of support for the blind.

The risk of loss of support is familiar in the case of so-called orphan drugs. When the number of individuals suffering from a particular malady is small enough, it may not be profitable for pharmaceutical companies to produce drugs valuable to these individuals. In the United States, special legislation provides financial incentives for companies to produce such drugs by increasing the length of patents so that companies have more time to cover their costs.

The situation of orphan drugs illustrates an important point: There is a societal obligation to maintain support for those who are ill or disabled, but it does not follow that this generates a valid claim on the part of those individuals that society must ensure that their numbers do not diminish. So even if proponents of the loss of support argument could do what they have not done--supply strong empirical evidence for the generalization that loss of support would result--this would not suffice to show that any limitations on efforts to prevent disabilities are called for.

One last example will reinforce this point. Suppose that Jill is a young adult who faces life with paraplegia--unless she undergoes a surgical procedure. If she has the surgery, she can look forward to a life with all the opportunities that go with normal mobility.

She chooses to have the surgery. As a result of her choice, the ranks of the disabled will diminish by one. Does her action harm people with disabilities? Presumably not--her cure is very unlikely to make much of a difference. Suppose that many people in her situation make the same choice, with the result that there is a significant reduction in the number of people with paraplegia. Have those who had the surgery harmed the people with paraplegia who cannot be cured or who for some reason chose not to be cured? If by harming someone is meant worsening their condition, then it may well be true that large numbers of surgical cures for paraplegia might harm those who remain paraplegic. It does not follow, however, that widespread use of the curative surgical intervention should be prohibited or that it would be morally wrong.

It is necessary here to distinguish between being harmed and being wrongly harmed. Even if the minority who remain uncured are harmed by widespread use of the surgical intervention it would not follow that they have been wrongly harmed, unless one is willing to make the implausible claim that those who elected to be cured had no right to make this choice. But whether they have a right to make such a choice will depend primarily upon whether they have a legitimate interest in avoiding being disabled and whether that legitimate interest is of such moral weight that it warrants the special protection implied in the notion of a right. Having a right to do something means having a sphere of discretion to do what might otherwise be wrong, including what may contribute to a worsening of the condition of others. For example, if you have a right to compete with me for a certain prize, then the fact that your entering the competition worsens my condition does not show that you wrong me by competing.

As will become more evident later in this chapter, our critique of the loss of support argument reveals quite general features of other arguments advanced on behalf of persons with disabilities. First, whether their proponents recognize it or not, these arguments are not limited to interventions to prevent genetic diseases. They apply to all disabilities regardless of their etiology, and their general implications are highly implausible. Second, like the loss of support argument, the other arguments considered here are flawed because they consider only some of the legitimate interests at stake. They give no weight to the legitimate interests that persons have in not having disabilities. Thus, ironically, their arguments are exclusionary.

The Justice Trumps Beneficence Argument

We have just seen that the "loss of support argument" overlooks the legitimate interests that people have in avoiding disabilities. This interest is not merely legitimate--that is, not subject to any moral criticism as such--as we saw in Chapter Three, it is the basis of a claim of justice. There we argued that there are cases in which justice requires interventions to correct or prevent genetic defects. The chief basis for this conclusion is that an adequate account of justice includes a commitment to equal opportunity, and that genetically based disabilities, like other disabilities, impair opportunity.

The conclusion that genetic interventions can be required by justice has a direct and devastating implication for another argument advanced on behalf of persons with disabilities and against genetic intervention. This is the "justice trumps beneficence" argument. This argument asserts that while only beneficence, not justice, speaks in favor of genetic intervention to prevent disabilities, the widespread use of genetic interventions to prevent disabilities puts disabled persons at risk of suffering grave injustices (International Association of Societies for Mental Disabilities 1995). More explicitly, the argument is:

1. Genetic intervention to prevent disabilities is not required by justice, but only by the value or principle of beneficence.

2. The widespread use of genetic intervention to prevent disabilities would create a serious risk of injustices to disabled people.

3. Justice trumps beneficence (when the pursuit of beneficence creates a risk of serious injustice, the avoidance of injustice should take precedence).

4. (Therefore) Widespread genetic intervention to prevent disabilities ought not to be undertaken.

In a nutshell, the "justice trumps beneficence argument" contends that it is wrong to act on the principle of beneficence to the detriment of the principle of justice.

Consider premise 2. Our critique of the loss of support argument has already shown that even if a reduction in the incidence of disabilities does put disabled persons at risk for loss of support, it does not follow that we should forgo the effort to prevent disabilities by genetic or other means. In the next section of this chapter we examine another interpretation of premise 2 of the "justice trumps beneficence argument," one that focuses on a different risk to those with disabilities. There we evaluate the allegation that genetic intervention to prevent disabilities expresses a radical devaluation of persons with disabilities, which violates their right to be recognized as persons of equal moral worth. But here we wish to attack the third premise, which is false for two reasons.

First, some benefits are not "mere benefits." Achieving a great good or avoiding a great harm can in some cases be obligatory, not merely commendable or desirable. Indeed, there can be instances in which the obligation to achieve a great good or to prevent a great harm trumps obligations of justice, because those particular obligations of justice are less weighty.

To fail to consider this possibility is to make the mistake of assuming that obligations of justice are the weightiest obligations in all circumstances. What distinguishes these obligations from others, including obligations to provide benefits and to avoid harms, is not their relative strength, but their grounds--the kinds of considerations that are appealed to in justifying the assertion that there is an obligation (Buchanan 1987). So even if it were true that beneficence but not justice speaks in favor of genetic intervention to prevent disabilities, it would not follow that we ought never to intervene when intervention creates a risk of injustice.

Second, we have shown in detail in Chapter Three that justice--and more specifically, equal opportunity as one component of justice--sometimes requires genetic intervention to prevent disabilities. And in Chapter Five we saw that our obligations to prevent harm can also require genetic interventions, whether these obligations are understood to be obligations of justice or not. So it is a mistake to say that the prospect of genetic intervention to prevent disabilities pits mere beneficence against justice, even if it can be shown that such intervention would put people with disabilities at risk of being treated unjustly.

The justice trumps beneficence argument portrays an unequal contest between the need to protect people with disabilities against the most fundamental injustice, on the one hand, and the merely desirable goal of conferring benefits, on the other. But this is inaccurate. Instead we have either a conflict between obligations of justice (or to prevent serious harms) and obligations to minimize the risk of injustice. Whether we should underake genetic interventions to protect equal opportunity (or for the sake of preventing serious harm) or refrain from intervening in order to avoid the risk of injustice to people with disabilities will depend on the nature of the injustice for which people with disabilities are put at risk and the likelihood that this injustice will occur.

But if this is so, then we can proceed to examine the claim that the widespread use of genetic intervention to prevent disabilities puts people with disabilities at risk for being treated unjustly and we can dispense with the justice trumps beneficence argument, which we have seen is unsound anyway because of its oversimplified conception of strength of obligations of justice relative to those of beneficence.

The Expressivist Objection

This objection, or rather this family of objections, focuses on what may be called the expressive character of decisions to use genetic interventions to prevent disabilities. The claim is that decisions to intervene--and indeed the whole enterprise of developing the knowledge and technology to make such interventions possible--express negative judgments about people with disabilities, and that these judgments themselves constitute a profound injustice to those people.

The negative judgments allegedly expressed in the enterprise of genetic intervention are said to betray a profound miscomprehension of the core concept of morality: the value of human life. The mistake is to assume that only "perfect" human lives are of sufficient value to be allowed to exist or to come into existence.

According to the expressivist objection, this error is not merely a mistake in ethical theory. To express these negative judgments about people with disabilities is itself an injury to them, a violation of their most fundamental right--the right to be regarded as persons of equal worth.

In addition, the social acceptance of the enterprise that expresses these negative judgments, the project of using genetic knowledge for improvement through selection, puts persons with disabilities at risk in more concrete ways. Those who are not regarded as members of the community of persons with equal worth, those whose fundamental value is denied, are likely to be neglected and abused, if not exterminated. The negative judgments allegedly expressed in the new genetics, then, are these:

1. The lives of individuals with disabilities are not worth living.

2. Only perfect individuals should be brought into the world. (Imperfect individuals have no right to exist.)

Disabilities rights advocates rightly reject both judgments. Those who advance the expressivist argument are quick to emphasize that the first judgment reveals an ignorance of the joys and fulfillments that even severely disabled individuals can experience. The second judgment is rejected on the grounds that it rests on a false assumption about what makes individuals worthy of equal respect and concern, and hence of life. It is not whether or not someone measures up to some supposed standard of perfection that matters so far as equal worth is concerned, but rather an individual's humanity (or, on some accounts, personhood).[2]

It is no doubt true that people who have not experienced serious disabilities themselves or been close to people who are seriously disabled sometimes--perhaps often--fail to appreciate the quality of life of people with disabilities. They may focus only on the suffering and limitations the disability entails, underestimating both the positive experiences people with disabilities can have and the remarkable capacity that human

beings have to adapt their expectations and goals to changes in their abilities (Buchanan and Brock 1989).

Even if this is true, however, it does not follow that all or even most of those who are not disabled believe that disabilities as such, or even serious disabilities, make life not worth living. It may well be true that many people believe that there are some disabilities so severe that they make life not worth living. And it may be that some interventions to prevent disabilities are undertaken out of this belief. But from this it does not follow that whenever we intervene to prevent a disability our action betrays a belief that the lives of disabled persons are not worth living.

What, then, would lead some disabilities rights advocates to conclude that the enthusiasm for using genetic science to reduce the incidence of disabilities expresses the judgment that the lives of disabled people are not worth living or that such people ought not to exist? The answer, apparently, is that they believe that central to the new genetics is the decision to prevent disabilities by avoiding the birth of individuals with disabilities--and that this decision must rest on the judgment that life with disabilities are not worth living or that less-than-perfect individuals ought not to exist or have no right to exist [Asch in Arras and Steinbock, 4th edition, 1995).

As a general form of argument, the expressivist objection is invalid. An example that has nothing to do with genetic intervention will show why this is so. Suppose that a woman can either conceive a child when she has German measles (Rubella), knowing that if she does there is a significant risk that the child she bears will suffer a serious impairment, or she can delay conception until her illness passes. Surely the woman's decision to postpone conceiving a child need not be an expression of the belief either that if the child were born with an impairment its life would not be worth living or that were it born with an impairment it would have no right to live or be unworthy of equal respect and concern.

To reveal more conclusively the weakness of the expressivist argument, we must clarify what it means to say that a decision expresses (or presupposes) a particular judgment. This happens if and only if either, as a matter of psychological fact, one could only be motivated to make this judgment if the person ascribed to the judgment (that is, that one could not psychologically make the decision if he or she did not believe to be true what the judgment affirms), or one cannot rationally make the decision without believing what the judgment affirms. So the expressivist objection is that decisions to use genetic intervention to prevent disabilities rationally or motivationally presuppose either the judgment that the lives of disabled individuals are not worth living, or the judgment that less-than-perfect individuals ought not to exist, or both.

Preventing Disabilities Without Terminating the Lives of Individuals with Disabilities

It should be clear that the expressivist objection only applies to those genetic interventions that prevent disabilities by preventing the existence of individuals who would have the disabilities in question. If the disability is prevented in other ways, there is no reason whatsoever to believe that the decision expresses a judgment that life with those disabilities would not be worth living or that the individual who had those disabilities ought not to exist.

This is a significant point because some modes of genetic intervention do not prevent disability by preventing the existence of individuals who would have the disability. To see that this is so, it is useful to distinguish the following four types of intervention:

! preventing a genetic condition that would be disabling by "switching off" the gene that produces the disabling condition or by inserting normal genes either into embryos or gametes or into individuals after they are born.

! avoiding conceiving a fetus with a genetic condition that would produce a disability by using contraceptives when genetic testing reveals a significant risk of the condition.

! avoiding conceiving a fetus with a genetic condition that would produce a disability by using artificial insemination or embryo transplant.

! preventing the birth of an individual determined to have a genetic condition that would produce a disability or to be at high risk of having that condition by aborting the fetus.

Opting for the first form of intervention in no way presupposes--either motivationally or rationally--a judgment that only perfect individuals should exist or that people with disabilities ought not to exist, anymore than performing conventional surgery to restore a blind person's sight does. In either case the motive may be, and often is, simply the desire to remove serious limitations on the individual's opportunities and to avoid needless suffering. One can be motivated by this desire and can rationally decide to act on it without believing either that the individual's life with the limitation is not worth living or that only perfect individuals should exist. If Jill decides to undergo the surgical procedure to cure her paraplegia, she need not believe that her life or anyone else's life as a paraplegic is not worth living, nor need she consciously or unconsciously believe that only perfect individuals should exist.

Similarly, the second and third modes of intervening to prevent disabilities need not express either of the negative judgments the expressivist argument attributes to those who advocate genetic interventions. To be willing to undertake either of these options, all that is necessary is the desire not to bring into the world an individual whose opportunities will be severely limited and who may also experience considerable suffering.

There are a number of beliefs that may account for this desire, any of which would make the decision fully rational. First, someone may simply wish to be spared avoidable and serious strains on his or her marriage or family. Or they may wish to avoid putting additional pressure on limited social resources needed for the achievement of distributive justice in health care and in other areas, including the support of existing individuals who have disabilities.

In the second and third interventions, using contraception, artificial insemination, or embryo transplant, acting on these desires does not violate anyone's rights because there is no existing individual who has rights that might be violated. It is the coming to be of an individual that is avoided. No existing individual's life is terminated. So even if one believes that fetuses are persons with all the rights that persons have, including the right not to be killed, avoiding disabilities by avoiding conception of individuals who would be disabled neither violates anyone's rights nor necessarily expresses any negative judgments about the lives of people with disabilities. Furthermore, to judge that it is morally permissible to avoid bringing a disabled person into the world, a person need not judge that disabled persons ought not to be born anymore than judging that it is not wrong to refrain from getting a Ph.D. commits someone to the judgment that no one ought to get a Ph.D.

Only the fourth mode of intervention has any prospect of being vulnerable to the expressivist objection, because it is only in that case that there is a decision to terminate a life that will involve a disability. This point is extremely important because it shows that even in principle the expressivist objection cannot provide a reason for abandoning or restricting genetic interventions per se, but at most only one mode of intervention.

Genetic Intervention and the Status of Fetuses

Notice, however, that even in the fourth type of intervention the decision to intervene--to abort a fetus with a disabling genetic condition--need not express either of the two negative judgments about people with disabilities. Someone who decides to terminate a pregnancy after learning that the fetus she is carrying has Down syndrome may simply be motivated by the very same desire that motivates the decision to undertake any of the other three modes of intervention: the desire not to bring into the world an individual with seriously limited opportunities. Nor is there anything illogical or irrational about acting on this desire while firmly rejecting the judgment that the lives of disabled people are not worth living or that people with disabilities have no right to exist.

In the case of the fourth mode of intervention, as with the other three modes, the desire to avoid the birth of an individual with disabilities may be based on any of several quite morally unexceptionable considerations. A person may wish to avoid serious strains on a marriage or the ability to fulfill responsibilities to existing children, or to avoid diverting scarce resources needed for the achievement of distributive justice--and yet the individual may consistently believe that the lives of many or even of all individuals with Down syndrome are worth living and that every child and adult with this genetic condition has the same right to life and to recognition of equal worth as any other person. Nor need the person believe that only perfect individuals ought to exist. An individual can rationally decide to abort a fetus with a genetic defect while nevertheless believing that persons with disabilities are of equal worth if he believes that fetuses (or at least fetuses up to and including the stage at which the abortion is performed) are not persons and hence do not have the rights and equal moral status of persons.

To believe that it is permissible to avoid a serious disability by selective abortion one need not believe that individuals with that disability ought not to be born. All that is necessary is the belief that the fetus has no right to be born. Furthermore, one can--and many people apparently do--consistently believe both that fetuses, whether they will have disabilities or not, have no right to be born (because they are not persons) while believing that all persons, including those with disabilities, have a right to exist, and hence a right not to be killed, because they are persons.

Similarly, there is nothing inconsistent or motivationally incoherent about believing that a person ought not bring a disabled child into the world and believing that it is not the case that individuals with disabilities ought not to be born. (Someone can believe that a person ought not to marry without believing that marriages ought not to occur.)

Perhaps those who advance the expressivist argument will still not be convinced of our rebuttal. The appeal of the argument is its simplicity. Thus a person who herself has a disability, impatient with the subtleties and hair-splitting of the preceding arguments, might reply:

No analysis of the possible motives or of the coherence of the possible reasons for preventing disabilities can erase one simple fact: When you endorse the use of genetic science to prevent disabilities, you are saying that people like me ought not to exist. And when you say that people like me ought not to exist, you devalue me in the most fundamental and threatening way imaginable. Your conception of the value of human life denies that my life, imperfect as it is in your eyes, has value.

Recall, however, that to say that it is permissible to avoid disabilities by genetic interventions is not to say that we ought to reduce the incidence of disabilities, much less that disabled persons ought not to exist. In Chapters Three and Five we argued that there can be obligations of justice, as well as obligations to prevent harm, that require genetic interventions. From this perspective, we are committed to the judgment that in the future the world should not include so many disabilities and hence so many individuals with disabilities. But it is not the people with the disabilities that we devalue; it is the disabilities themselves. We do not wish to reduce the number of people with disabilities by taking the life of any individual who has a disability.

Devaluing Disabilities, Not People with Disabilities

We devalue disabilities because we value the opportunities and welfare of the people who have them. And it is because we value people, all people, that we care about limitations on their welfare and opportunities. We also know that disabilities as such diminish opportunities and welfare, even when they are not so severe that the lives of those who have them are not worth living, and even if those individuals do not literally suffer as a result of their disabilities. Thus there is nothing irrational, motivationally incoherent, or disingenuous in saying that we devalue the disabilities and wish to reduce their incidence while valuing existing persons with disabilities, and that we value them equally as much as those who do not have disabilities.

Another example may help to dispel the charge that when we seek to reduce the frequency of disabilities we thereby devalue people who have them. Suppose that a parent encourages her child to work hard in school by pointing out that if he does not, his career options will be limited to "menial" jobs in which there is little potential for development of new skills and little prospect of advancement. Must we say that such a parent devalues persons who do "menial" jobs? No such attitude is implied in the reasons the parent gives to the child for working hard in school or in her motives for doing so.

Of course, it may be true that some parents who have always engaged in "white-collar" work tend to underestimate the opportunities for development of skills and for satisfactions that some of the less skilled "blue-collar" jobs sometimes offer. Nevertheless, the advice the parent gives may be sound. She may be correct both in her judgment that this individual would be happier and more fulfilled with a different kind of job and in her prediction that doing well in school is a prerequisite for getting such a job. She may only be expressing concern for the well-being of her child in the light of a realistic estimate of the educational and economic facts of life, without in any way denigrating persons who perform "menial" labor.

None of this is to deny that some "white-collar" workers look down on "blue-collar" workers, nor that some "abled" persons devalue the "disabled." Nor is it to deny that some "blue-collar" workers have more job satisfaction than some "white-collar" workers or that some people with disabilities have more fulfilling lives than some people who do not have disabilities.

One last hypothetical will clarify our observation that devaluing disabilities need not imply devaluing individuals with disabilities. Suppose God tells a couple: "I'll make you a child. You can have a child that has limited opportunities due to a physical or cognitive defect or one who does not. Which do you choose?" Suppose that the couple answers as follows: "Lord, we choose the child without the defect; but if you should decide to give us the child who has disabilities we will love it as much as we would the other." There is surely nothing illogical or motivationally incoherent in this admirable response.

The proponent of the expressivist objection might concede this point but offer one additional argument:

Even if the decision to use genetic interventions to prevent disabilities does not necessarily express negative attitudes, such attitudes are all too common in our society. In fact, negative attitudes are so widespread and pronounced that many individuals with disabilities experience greater limitations on their opportunities as a result of stigma than from their physical or cognitive impairments. Undoubtedly, these negative attitudes are part of the motivation for the willingness to develop and use genetic interventions. We should not encourage these attitudes by using social resources to create vehicles for their expression and perpetuation.

This argument might be telling if there were nothing of moral significance to be lost by following its advice. There is something to be lost, however: the chance to avoid or correct serious limitations on individuals' opportunities and to reduce human suffering. Accordingly, the wiser course of action is to continue the laudable fight to change negative attitudes toward people with disabilities while developing genetic intervention technologies to accomplish the same goal that has inspired the greatest triumphs of the disabilities rights movements in overcoming physical barriers in the social environment. For it is crucial to remember that the strongest argument in favor of removing physical barriers is that this is necessary to achieve equal opportunity, and that all individuals have a right to equal opportunity.

Summary of Response to Expressivist Objection

It may be useful at this point to summarize the main points of our complex discussion of the expressivist argument against genetic intervention. To be sound, the argument either must show that it is motivationally impossible or irrational both to devalue and seek to avoid disabilities while at the same time valuing equally individuals who have disabilities, or it must defend the view that fetuses are persons, with all the rights that persons have, and that avoiding disabilities by aborting fetuses with disabilities is the moral equivalent of reducing the incidence of disabilities by exterminating disabled children and adults.

The first alternative is unconvincing. There are many instances in which we devalue (and seek to avoid) certain characteristics that some individuals have without devaluing individuals who have them. The second alternative comes at a steep price: not only must the disabilities rights advocate articulate and defend an account of personhood that shows that fetuses are persons; he must also acknowledge that the fundamental error of those who advocate selective abortion to avoid disabilities is not that they devalue individuals with disabilities, but that they fail to recognize that fetuses, whether disabled or not, are persons. The argument, then, would have nothing to do with disabilities as such.

Moreover, even if it were assumed that fetuses are persons and that hence killing them to reduce the incidence of disabilities is morally indistinguishable from exterminating disabled children and adults, this would have no negative implications for the other three modes of genetic intervention to avoid disabilities. None of these involves killing a fetus, so none can be described as killing a person, even if we assume that fetuses are persons. Therefore endorsing these modes of reducing disabilities need not express and does not presuppose the judgment that existing individuals with disabilities have no right to live.

To repeat: Advocating the fourth mode of intervention (selective abortion) is tantamount to saying that people like you (who have disabilities) have no right to exist only on the highly controversial assumption that fetuses are persons. Opting for the first, second, and third modes of intervention has no implications at all for the worthiness or unworthiness of "disabled lives," regardless of which view of the moral status of fetuses is correct. What appeared to be a distinctive objection to a new technology turns out to be a familiar objection to the age-old practice of abortion.

None of this is to deny that some members of the disabilities community are genuinely offended by what they take to be the misplaced zeal to harness the powers of science to prevent disabilities. Granted the shameful history of discrimination against and insensitivity toward persons with disabilities, their taking offense is perfectly understandable. However, it is one thing to say that certain behavior is offensive to a particular group, and quite another to say that the fact that the group is offended constitutes a violation of anyone's rights.

In general, a liberal society cannot count the occurrence of offense, as distinct from rights violations, as a sufficient ground for curtailing liberty, whether it is the liberty of a person to choose a surgical procedure that will cure her own paraplegia or that of her child, or the liberty of a researcher to try to develop a technique for preventing a genetically based impairment (Feinberg 1984).

The Deaf Culture Argument

As a supplement to our critique of the expressivist argument, we must consider one final, striking argument that has recently been advanced by some members the deaf community. This argument has been advanced in response to a surgical intervention to alleviate deafness, but it is of broader interest, encompassing genetic interventions as well. What is fascinating about this anti-interventionist argument is that it directly challenges a basic assumption of our rebuttal of the expressivist argument--namely, that because disabilities limit opportunity, they ought to be prevented.

Some individuals who are deaf have argued that even though being deaf limits some opportunities, the deaf community has developed a rich culture that provides unique and valuable opportunities and benefits to its members. In particular, it is said that the "deaf culture" provides exceptional solidarity as well as a sign language that is uniquely expressive. The claim is that the goods conferred by membership in the community of persons who are deaf outweighs or at least counterbalances the limitations on opportunity that deafness entails.

The first thing to notice about this argument is that it is not easily generalizable as an argument against interventions to prevent disabling impairments generally. It is not so plausible to argue that there is a paraplegic culture or a Down syndrome culture, much less a Lesch-Nyhan or Tay-Sachs culture. Nevertheless, proponents of this argument have done an inestimable service by calling to our attention the fact that there is such a thing as the deaf community, that it possesses at least some of the important features of a culture, and that belonging to this community brings important benefits.

What the argument overlooks, however, is that there is an asymmetry between the limitations on opportunity that deafness brings and the goods of membership in the deaf community. Without an enormous expenditure of social resources, the limitations imposed by being without hearing in a world in which most people hear are quite severe. Not being able to hear excludes a person from effectively pursuing many options, some of which are generally very important for most people.

But the benefits provided by membership in the "deaf community," while important and impressive, may not in fact be available only to those who are deaf. Solidarity is certainly available to members in other communities--religious groups, political groups, and any number of other forms of community can and do provide solidarity for many people. Nor is it at all obvious that an appreciation of the uniquely expressive character of sign language is unavailable to those who are not deaf. (It is no doubt true, of course, that if a person who is not deaf will have less incentive to learn sign language and hence will be less likely to reap its unique benefits.)

But even if it could be shown that the distinctive benefits of sign language are only available to the deaf, it is one thing to say that those who are deaf gain a great good from this mode of communication. It is much less plausible to say that a reasonable person confronted with a choice between suffering the limitations of deafness while gaining the benefit of this mode of expression and avoiding the limitations of deafness but not being able fully to appreciate the unique expressive power of sign language would choose the latter. Yet it seems that the appropriate standpoint from which to decide whether to intervene to prevent children from being born deaf or continuing to be deaf is that of a reasonable person confronted with a choice ex ante.

Notice that this response to the deaf culture argument does not commit us to the view that a competent deaf individual ought to be subjected to hearing-restoring surgical intervention against his or her will. Our claim is only that the appropriate perspective for estimating whether to prevent or restore loss of hearing in an individual who is not competent to decide for himself or herself (a fetus or a child) is that of a reasonable person confronted with the choice of whether to be deaf or not. Nothing we have said about the commitment to removing barriers to opportunity warrants overriding the purely self-regarding choices of competent individuals. The point, rather, is that the fact that being deaf can bring special benefits is not a sufficient reason for one person (a parent) to choose that another, nonconsenting person (a child) should suffer this impairment.

It may be possible to imagine a world in which a reasonable person, confronted with such a choice, would choose deafness, but this is not our world. To make such a choice reasonable for most people would require an enormous reallocation of social resources, indeed a radical restructuring of our modes of production and social institutions, in order to make it true that for most people who are deaf, the benefits of membership in the deaf community outweigh the limitations on opportunity that deafness brings.

The next sections of this chapter take up the issue of the scope and limits of the obligation to change society in order to reduce the opportunity-limiting effects of disabilities. There we argue that though such an obligation exists, it is a limited obligation. It is limited by the legitimate interest that persons without disabilities have in being able to participate in cooperative schemes that are suitable to their own capacities.

A proponent of the deaf culture argument might not be convinced, however. He might respond as follows:

Everything you say about being deaf is equally true of being black or being gay. In our society, being black or gay imposes significant, often severe, limitations on a person's opportunities. But surely this is no reason to prevent the birth of blacks or gays. Indeed, there is something grossly immoral about the very idea of striving to have a world in which there are no gays or blacks on the grounds that we ought to avoid bringing people into the world who suffer the limits on opportunity that people from these two groups often suffer.(Suppose there turned out to be a "gay gene" or complex of genes that significantly increased the probability, across a wide range of prevalent social environments, that an individual would be gay. Suppose also that the presence of this gene or complex of genes could be accurately detected in fetuses).

There is, however, a fundamental difference between the limitations on opportunity that result from being deaf and those that result from being gay or African American. The limitations a gay or black person suffers are injustices in a quite uncontroversial sense: they are forms of discrimination. While deaf people and others with disabilities certainly do continue to experience discrimination, they would continue to suffer limited opportunities even if there were no discrimination against them. This difference is signficant, because it has an important implication for how we ought to regard the costs of eliminating limitations on opportunity that result from being deaf as opposed to those that result from being gay or black.

The fact that it is costly to remove barriers of discrimination against blacks or gays has no moral weight because no one can have a morally legitimate interest in preserving unjust arrangements. (Achieving a fair distribution of the costs of reform is another matter, of course.) However, as we will argue in detail in the next section, the costs of changing society so that having a major impairment such as deafness imposes no limitations on individuals' opportunities are not so easily dismissed. Those costs count from a moral point of view, because there is a morally legitimate interest in avoiding them. Understanding what this interest is and how it can conflict with the interest that persons with disabilities have in being able to interact socially without limitations on their opportunities takes us to the heart of the theory of the morality of inclusion.

V. The Social Construction of Disability and the Morality of Inclusion

Thus far we have examined and evaluated the allegation that the new genetics, even when restricted to the apparently benign enterprise of preventing or curing genetically based diseases, is nonetheless exclusionary, like the old eugenics. One complaint frequently raised by some members of the disabilities rights movement remains to be considered. As we noted earlier, it takes the form of an arresting slogan: We should direct our energies to "changing society, not people." Addressing the view behind the slogan forces us to face squarely the last of the three questions that a theory of the morality of inclusion should answer: To what extent is there an obligation to ensure that the nature of society's most fundamental framework for cooperation renders it more rather than less inclusive?

The slogan that we ought to "change society, not people" is an exhortation to modify our cooperative schemes to enable those who are now disabled to function effectively in them, rather than using genetic or other medical interventions to prevent or remove the characteristics of persons that make them unable to function effectively in cooperative schemes as they are now structured. Initially, at least, proponents of this slogan have focused on modifications of the physical features of the social world--installing curb breaks to make streets navigable for those in wheelchairs, ramps so that these individuals can enter public buildings, braille signs in elevators, and so forth.

But in principle the slogan has much more radical implications. Some people we now regard as disabled are barred from effective participation in various activities not because they lack physical access to them, but because a mastery of the complex rules, procedures, and symbolic manipulations required for these activities is beyond their cognitive or perceptual capacities.

Taken literally, then, the disabilities rights slogan urges us to simplify our cooperative schemes, if necessary, to make them more inclusive. Furthermore, the implication is that modifying our cooperative schemes is always or at least generally morally preferable to modifying people so that their capacities better match the demands of our cooperative schemes.

Distinguishing Disabilities from Impairments

The force of the disabilities rights slogan stems from a recognition of the fact that disabilities are at least in part socially constructed. To clarify what this means and why it is relevant to the morality of genetic interventions to prevent disabilities, it is first necessary to distinguish a disability from a physical or mental impairment.