CHAPTER FIVE: REPRODUCTIVE FREEDOM AND

THE PREVENTION OF HARM

I. The Wider Context: Conflicts Between Liberty and Harm Prevention

A common diagnosis of one of the major moral wrongs done by the old eugenics was its infringement of many individuals' reproductive freedom, most blatantly in widespread sterilization programs, more subtly in discouraging those thought to have "bad genes" from reproducing. Our ethical autopsy of the old eugenics in Chapter Two confirmed this assessment. In our own era reproductive freedom is again being challenged by new genetic knowledge and technologies. But if we are to respond properly to the challenges to reproductive freedom posed by the new genetics, we need a systematic analysis of the scope, limits, and content of reproductive freedom, as well as a clear view of the moral values that ground its importance. To provide this is one aim of this chapter.

New knowledge about the risk of genetic transmission of diseases and other harmful conditions will give individuals both the opportunity and the responsibility to choose whether to transmit such harms to their offspring or to risk doing so. The information of genetic risk could be used by individuals prior to conception to decide whether to conceive when risk is present, or after conception but before birth to decide whether to abort an affected fetus. New genetic knowledge may also allow genetic or other interventions in vitro or in utero to prevent the development of the harmful condition. As these new options become possible, individuals must decide whether to seek to prevent these harms to their offspring.

The choices they face will include what actions and interventions would be morally permissible to prevent the harms--for example, some individuals will decide abortion is not a morally permissible intervention--and what actions and interventions would be morally required to prevent harm. Some genetic interventions will be added to other behaviors, such as abstaining from excessive alcohol use or substance abuse during pregnancy, which many people now consider morally required in order to prevent harms to the fetus and the child it will become.

This new genetic knowledge will also create new societal choices about public policy on the use of this knowledge and the interventions it makes possible to prevent harm. Some people will conclude that society should observe a strict neutrality regarding use of this information-- that is, that public policy should not require or encourage individuals to use genetic information in particular ways in their reproductive choices. This position extends to genetic interventions the current conventional view supporting value-neutral, nondirective genetic counseling.

Others, however, will conclude that public policy should abandon strict neutrality. There is a large range of possible social influences on the use of genetic information in reproduction that vary in the degree of pressure exerted on individuals' choices and in other morally significant respects. For example, public policy might be restricted to education and other means of encouraging individuals to take some actions to prevent genetically transmissible harms. Or it might intrude further into individuals' choices by using legal measures designed coercively to require individuals to take some actions to prevent genetically transmissible harms.

In support of this last position, it could be emphasized that the fundamental aim of the coercive force of the criminal law is to prevent individuals from causing a variety of harms to other persons. The prevention of harms to others--as opposed to other uses of the law, such as to prevent offense, to prevent harms to oneself, or to enforce morality--is the least ethically controversial ground for the criminal law's coercive interference with individual liberty. In nongenetic contexts, coercive prenatal interventions to protect a fetus, such as forced cesarean sections, forced drug rehabilitation for pregnant women, and forced in utero surgery, as well as even involuntary sterilization of mentally retarded individuals to prevent them from conceiving, have received some public and professional attention and support, although all remain highly controversial. Each of these issues forces society to clarify the proper scope and limits of reproductive freedom.

In this chapter we focus on another challenge to the extent of reproductive freedom--the prevention of genetically transmitted harms. In some cases this will involve applying relatively familiar ethical principles and arguments to the genetic context; in others, it will lead us to less familiar and more philosophically perplexing problems that cannot be adequately addressed within the limits of standard moral principles and theories. Of course, at this time we can only speculate about the precise nature of the interventions to prevent genetically transmitted harms that will become possible in the future; a more complete analysis of concrete cases must await the details of those situations. In broad terms, we have characterized the concern of this chapter as the conflict between reproductive freedom and the prevention of harm, and so we begin by exploring the nature or scope of reproductive freedom and the ethical interests or values that ground its importance and support its protection.

II. What is Reproductive Freedom?

Rights and Freedoms

We shall not attempt a full analysis of reproductive freedom, but shall concentrate on the aspects of it most relevant to the issues raised by interventions to prevent genetically transmitted harms that are possible now or may become possible in the future. John Robertson characterizes "procreative liberty," which we take here to be effectively equivalent to reproductive freedom, as "freedom in activities and choices related to procreation," but notes that "the term does not tell us what activities fall within its scope" (Robertson 1986). In order both to understand when reproductive freedom comes into conflict with other values such as the prevention of harm to others, and to address which values or interests should prevail in those conflicts, we need a relatively full characterization of reproductive freedom.

It is common in discussions of these issues to speak from the outset of a right to reproductive freedom--a moral, not just a legal right. For the most part, we will not use the language of a moral right to reproductive freedom. Instead, we will speak of the scope of actions and practices that are properly understood to be a part of reproductive freedom. We will first describe the various components of reproductive freedom, leaving open both the moral value of these various components and when they may justifiably be limited or infringed. We shall then turn to the main reasons or grounds for the moral value or importance of reproductive freedom.

Some or all of our reasons or grounds for the moral importance of reproductive freedom have been used by others to support a moral right to reproductive freedom. We shall not pursue this moral right both in order to avoid the diversion of having to develop and defend a theory of moral rights, and because doing so is unnecessary. Having described the scope of reproductive freedom and defended the main moral grounds of its value or importance, we will be in a position to directly address when it can justifiably be limited or infringed in order to prevent genetically transmitted harms and hence what the broad contours of a legal right to reproductive freedom ought to look like. That is the central moral issue of concern in this chapter, and no side excursion into a theory of moral rights is needed to address it.

This is not to say, however, that we reject moral rights to reproductive freedom. Readers who prefer an approach to these issues in terms of a moral right to reproductive freedom can use our analysis of the scope and grounds of reproductive freedom as a basis for asserting that there is such a right and for understanding its nature. Here it is important to emphasize that assertions about moral rights are not beginning points in ethical analysis. Assertions about rights require support, and the only effective support, in our view, is to show how giving certain important interests and choices the special priority and protection that the concept of a right conveys serves those interests and choices. In the case at hand, it is the interests in reproductive freedom that are the key to making a case for a moral right to reproductive freedom and to articulating the content, scope, and limits of that right. Moreover, our analysis, like an alternative analysis in terms of a moral right to reproductive freedom, supports a legal right to reproductive freedom, but with greater clarity about the proper scope and moral grounds of that legal right than simple appeal to a moral right to reproductive freedom provides.

Positive and Negative Freedom

A common distinction in moral and political philosophy is between negative and positive freedom or liberty, although different theorists draw the distinction in different ways. As we shall understand it here, negative freedom exists when others do not act in particular ways that would restrict a person's freedom--for example, your freedom of speech requires that others not prevent your speaking on a particular occasion. Positive freedom or liberty can require others to act in ways necessary to enable a person to exercise the freedom or liberty--for example, a person's freedom of speech might require others to secure access to the media for the individual to exercise that freedom. Important freedoms referred to in moral and political discourse are typically complex combinations of both negative and positive components. Freedom of the person, for example, is typically understood to require both that others not assault the individual and that society use its police power to protect a person from assault.

Reproductive freedom also contains both negative and positive components--for instance, requiring that others such as the state not interfere with individuals' use of genetic information in reproductive decisions, and also requiring that important genetic information be made available to women who would otherwise not have access to it. Some theorists would not consider the failure to enable individuals to obtain relevant genetic information a limitation on reproductive freedom, but we so characterize it because of its effect in limiting individuals' pursuit of their important reproductive interests. Although negative components of reproductive freedom typically have a positive correlate, it does not always follow that if interfering with a negative component of reproductive freedom would be wrong, failure to do what is required by its positive correlate must be wrong as well. For instance, it may be morally wrong to interfere with a woman's use of some very expensive genetic intervention that she has secured with her own funds, but it would not be morally required, because of the great cost and limited benefit, to make that same genetic intervention available at public expense to anyone who wants it.

A particularly controversial moral issue about reproductive freedom is the scope and extent of the positive components that must be secured for persons--what actions, services, positive aid, and circumstances must others secure for individuals as part of their reproductive freedom, and who is required to do so. But it is the negative component--limiting the interference of others with reproductive choices--that is most important to our concerns in this chapter.

This remainder of this section contains, in brief summary form, the main components of reproductive freedom relevant to the issue of genetic interventions for the prevention of harm. We underline that what follows is a descriptive account of the scope of reproductive freedom--what it consists of. We do not claim that it is never morally justified to interfere with or limit any of these aspects of reproductive freedom. Indeed, the central issue of this chapter is when the prevention of genetically transmitted harm morally justifies some limitation on or interference with reproductive freedom.

The Choice of Whether to Procreate, With Whom, and by What Means

Reproductive freedom involves, first, uncoerced choice about whether to procreate at all, or, more precisely, whether to participate in procreative activity with a willing partner. There are activities and choices intended to lead to reproduction, and other activities and choices designed to prevent reproduction. Both are part of reproductive freedom. Reproductive freedom thus can include access to new reproductive techniques and to genetic information important to a choice about whether to reproduce, although that access might justifiably be limited because of the costs of some reproductive services or information.

The Choice of When to Procreate

The advent of modern methods of contraception and procreation make the choice of when to reproduce an increasingly important component of reproductive freedom. Contraception provides control over when a person will not reproduce, while new reproductive techniques make it possible for women to reproduce at ages when it would have been either unlikely or impossible for them to do so in the past.

Control over the timing of reproduction is important--on the one hand, for example, to enable women to avoid pregnancy when they are too young to be able to or to want to assume the usual responsibilities of parenthood, and on the other hand, to enable women, and sometimes men as well, to work or pursue careers before they begin families. The age at which women reproduce also affects the degree of risk of passing on some genetically transmitted disabilities to their prospective children.

The general point is that the timing of reproduction within a person's life can have myriad, complex, and important impacts on that life, over which reproductive freedom can provide some control.

The Choice of How Many Children to Have

Reproductive freedom includes control over the decision about how many children to have. This aspect of reproductive freedom has been and important feature of recent debates about human cloning, which would make it possible to produce many genetically identical individuals from the genetic material of one individual. Full reproductive freedom would include the freedom to have whatever number of children a person wishes, as opposed to the freedom to have only some limited number of children, but this freedom might be justifiably limited in certain social conditions by such considerations as the need to control population growth.

Different components of reproductive freedom can have different importance, both in general and in particular cases, and this is illustrated by the different importance of the freedom to reproduce and to be a parent at all, and the freedom to have whatever number of children a person wishes. There are at least two reasons for the greater importance of reproducing and parenting at all. First, some of the interests that support these activities--for example, the desire to have the psychologically and emotionally deep experience of parenthood--do not support, or only more weakly support, having a large number of children. Second, significant portions of the costs of having children are externalized in virtually all societies--that is, borne by others besides the parents (or children). The more this happens, the greater a claim these others might make to have some say in, or control of, the costs imposed on them.

One implication of the distinction between the interest in becoming a parent and the interest in having additional children is that the prevention of genetically transmitted harm to others may more easily justify limiting the number of children than reproducing and parenting at all.

The Choice of What Kind of Children to Have

One of the most controversial components of reproductive freedom is the freedom to choose what kind of children to have. It is also one of the aspects of reproductive freedom that can most directly conflict with genetic interventions to prevent harm to offspring.

The enormous increase in knowledge of human genetics that has taken place in recent years, together with techniques of prenatal genetic screening of potential offspring, has already produced substantial abilities to control the nature of our children. This control now takes the largely negative forms of genetic testing of parents to determine whether they have a risk of transmitting a particular genetic disease or condition to their children, or genetic testing of a fetus to determine whether it has, or has an increased risk of having, a genetically based disease or disability. Parents can then use this information in choosing whether to seek to conceive, whether to conceive without the risks by use of sperm donation, oocyte (egg) donation, or use of another woman's embryo, whether to abort an affected fetus, or whether to use treatment in utero when that is possible (Faden and Beauchamp 1986).

The Human Genome Project in combination with other genetic research will vastly increase individuals' ability to detect the risks or presence of harmful genetic conditions and to prevent them by forgoing conception, conceiving without the risk to the fetus, treating the fetus in utero, or aborting it. When genetic diseases or disabilities can be treated during pregnancy, a woman's right to choose whether to do so will typically be based on more than her reproductive freedom. A pregnant woman's right to decide about such treatment for her fetus will often be based as well on her own right either to bodily integrity, on her right to decide about her own health care (for example, if the treatment involves surgical invasion of her own body), or on her right as the potential infant's mother to make medical treatment decisions for it. When her decision is to treat such a disease, it will usually be in the interests of her future child and so supported both by any right she has to decide, based in either her own reproductive freedom or her right to give informed consent to medically invasive treatment, and by her future child's interests.

It is cases of failure to use available genetic testing and counseling to detect genetic risks and/or to take the steps necessary to prevent serious harm to a fetus and the child it will become that are the central concern of this chapter. (The use of genetic engineering to affect positively or enhance the genetic traits of offspring, as opposed to eliminating genetically based diseases and disabilities, is discussed in Chapters Four and Six; see also Glover 1984.)

The Choice of Whether to Have Biologically Related Children

One aspect of the choice of what kind of children to have--biologically related or not--deserves separate attention. When reproductive partners are able to reproduce and have no reason to believe that doing so would result in their children having any genetically transmitted disease or harmful condition, the issue of whether to have biological children typically does not arise. But when one or both partners are unable to reproduce by "natural" means, then even if adoption is an available alternative, they may use a variety of means of artificial assistance in reproduction, even including human cloning if it becomes possible in the future, in order to achieve and experience pregnancy and/or to have a biologically related child. For many people, the desire to have a biologically related child as opposed to becoming a parent through adoption is powerful, although we do not know how much this desire is socially and culturally determined.

When one or both reproductive partners risk transmitting a harmful genetic condition to their offspring, then adoption or the use of some means of artificially assisted reproduction that eliminates one or both parents' biological tie to the offspring may be necessary to reduce or remove that risk. An ethical evaluation of the parties' choice in this situation depends in significant part on the importance of the interest in having biologically related children. This interest is properly considered a part of reproductive freedom, but how much weight it should be given is problematic.

There are social circumstances, such as important religious or cultural norms and practices, that can make it reasonable for one or both prospective parents to give substantial weight to this interest. This interest might also have substantial weight if having children who are not biologically related, either by adoption or other means, would substantially undermine the experience of parenting. But we know from experience with adoption that many people fully or substantially satisfy their interest in parenting without having biologically related children. Absent some special impact of having children who are not biologically related, this aspect of reproductive freedom--like the aspect of having whatever number of children a person wishes--is usually of substantially less importance than the interest in becoming a parent at all.

The Social Conditions That Support Reproductive Choices

It is our view that reproductive freedom is properly understood to include the social conditions necessary to ensure persons a reasonable range of reproductive choices without undue burdens or unjust impacts from those choices. We characterize these social conditions as part of reproductive freedom, while recognizing that others will want to insist they are social conditions that make possible and facilitate reproduction and childrearing, not part of reproductive freedom itself. The important point, however, is that individuals' interest in reproduction includes an interest in the background social conditions necessary for them to have a reasonable and effective array of reproductive alternatives.

Sometimes these background conditions amount to the absence of restrictions on the setting for reproductive choices. For example, reproductive freedom includes some control over and choices about whether reproduction will take place inside or out of marriage, or in a heterosexual or homosexual relationship. In other cases, the background conditions necessary for a reasonable range of reproductive choices without unjust burdens involve a wide range of background social and legal practices that affect and facilitate the practices of having and raising children, such as maternal and paternal leave in the workplace and legal policies that forbid various forms of discrimination related to childbearing and parenting. In the specific genetic context, these supporting conditions include at least some access to genetic screening and counseling services.

Even if it is agreed that reproductive freedom should be understood to include the conditions necessary to permit reproductive choices in circumstances that do not result in unjust deprivations or other unjust impacts on those who choose to reproduce, or who choose not to, there will often be ethical disagreement as to whether a particular impact of a choice is unjust and if so what services must be provided to prevent such impacts.

Summary of the Scope of Concern

We now have a brief sketch of the main relevant components of reproductive freedom. This sketch shows that the common understanding of reproductive freedom as essentially concerned with preventing pregnancy by contraception or procreation by abortion is far too narrow. Even a broader understanding that includes access to the means of enhancing or creating fertility by new reproductive techniques is too narrow, because it too ignores many important effects of reproductive choices on women's, and to a lesser extent men's, lives that properly fall within a concern for reproductive freedom.

Our principal concern so far has been to describe the scope of concern of individuals' interest in reproductive freedom, not to argue for its moral importance. We turn now to a brief consideration of the chief moral values that together determine the moral importance of reproductive freedom. A clearer understanding of these values will allow us to consider when the obligation to prevent genetically transmitted harms is strong enough to justify limiting or interfering with reproductive freedom.

III. The Interests and Values That Determine The Moral Importance of Reproductive Freedom

The proper moral protection that reproductive freedom should have, and how it should be balanced against the prevention of genetically transmitted harms when the two are in conflict, depends on what moral interests or values support preserving and protecting reproductive freedom. We will sketch three different accounts of reproductive freedom's moral importance--they will be discussed only briefly because a fuller development would take us too far into issues of moral and political philosophy that cannot be pursued further here.

The first moral basis for the importance of reproductive freedom, and perhaps the most common argument in support of it, is individual self-determination or autonomy. The second moral basis--most natural within, though not exclusive to, utilitarian or general consequentialist moral views--is the important contribution that reproductive freedom typically makes to individuals' good or well-being. The third moral basis appeals to a principle of equality--in the specific version we sketch here, equality of expectations and opportunity between men and women.

It should be emphasized that these three different bases are not mutually exclusive, forcing us to choose among them. Each captures something morally important about reproductive freedom, so that a full account of the moral values of reproductive freedom must incorporate all three. Moreover, they suggest the way that quite different general moral theories converge in assigning substantial moral importance to reproductive freedom, even though those theories explain and defend that importance in different ways. This convergence is desirable in a pluralistic society, since it makes consensus possible about the moral importance of reproductive freedom among people holding otherwise different moral views.

Self-Determination

In a sentence, people's interest in self-determination is their interest in making significant decisions about their own lives for themselves, according to their own values or conception of a good life, and having those decisions respected by others. John Rawls has characterized this interest as based in people's capacity to form, revise over time, and pursue a plan of life or conception of the good (Rawls 1971). Of course, reference to a plan of life should not be taken too literally, as implying that people sit down at any point in time and lay out a fully detailed plan for the rest of their lives. Instead, the idea is that because individuals have conceptions of themselves as beings who persist over time, with both a past and a future as well as a present, they have the capacity to form more or less long-term plans, projects, and intentions for their lives. Other things being equal, the farther into the future they look, the less detailed and fixed these plans will typically be.

In addition to desires to pursue various activities and experiences, human beings have the capacity to value having particular desires or motivations. Other animals share with us a capacity for goal-directed behavior, and so perhaps a capacity in some sense for intentional behavior. Unlike other animals, however, people have the capacity to engage in reflection about their aims, ends, and motivations, and to affirm or deny them as their own and as defining not just whom they happen to be, but also what kind of persons they want to be or value being.

It is this capacity that makes it sensible to say that, unlike other animals, human beings have a conception of the good, which is more than simply having desires and motivations, the feature they share with other animals. When, as happens to everyone to a greater or lesser extent, people's desires are not as they want them to be, they can, within limits, take steps to change them to bring their actual motivational structure into closer conformity with the character that they value or want for themselves.

It is through this capacity for critical reflection about what they value having, doing, and becoming that people are able to form and then act on a conception of their good, rather than simply being guided by instinct and environmental stimulus. Of course, none of this is to deny that people's social and natural environment deeply affect their values and conception of the good. By having their choices about the life they want for themselves respected by others, in the sense at least of not being interfered with even if others disagree with the choices they make, people are able to take some control and responsibility for their lives and the kinds of persons they become.

Self-determination so understood includes both the reflective, critical process of forming a personal conception of the good and the capacity to identify or decide upon the particular aims and ends that give that conception concrete specification on particular occasions, as well as liberty of action in not being interfered with by others in the pursuit of personal aims and ends. The exercise of self-determination in these respects might be summarized as the process by which individuals help to shape their own unique identity.

Rawls has characterized people's interest in self-determination as a highest-order interest, meaning, at least in part, that it is of a higher order of importance than the particular aims and values that give content to their conception of the good or plan of life at any point in time (Rawls 1980). These aims and values, we know from our own and others' experience, can and will change over time in both predictable and unpredictable ways. People's interest in self-determination, however, is their interest in being valuing agents, able to guide their own lives in this way. The capacity to be or become self-determining is a central condition of personhood.

We initially characterized self-determination as people making significant decisions about their own lives for themselves and according to their own aims and values, but these two components are distinct. Most people value making important decisions about their lives for themselves, rather than having the decisions made for them by others, even if others might make better decisions even as evaluated from the perspective of those individuals' own values. In this respect, self-determination is part of a moral ideal of the person, not simply valuable in maximizing the satisfaction of people's other desires and interests. More specifically, the value of individuals making decisions concerning their own reproduction does not lie solely in their being able to make the best or wisest decisions, but also in this exercise of self-determination being part of an attractive moral ideal of the person, and one important aspect of individuals helping to define their own identity.

A second necessary point about the value of self-determination is that its exercise can be more or less important or valuable on different occasions and in different decisions. One of the most important determinants of this differential importance or value is the nature of the decision and subsequent action in question. Deciding what to have for breakfast tomorrow is vastly less significant than deciding what career to pursue, whom to marry, or whether and under what conditions to have children. Other things being equal, the more central and far-reaching the impact of a particular decision on an individual's life, the more substantial a person's self-determination interest in making it. This is why self-determination is so important in many of the decisions or choices that we have suggested comprise reproductive freedom. Few decisions that people make are more personal than these (in the sense that the best choice depends on personal aims and values) or more far-reaching in their impact on people's lives.

Another dimension of self-determination commonly accorded great respect and deference is the exercise of religious liberty. Religious liberty is important for reproductive freedom because many reproductive choices implicate and are guided by people's religious beliefs.

While these aspects of reproductive freedom do centrally affect women and, to a lesser extent, their male reproductive partners, they also affect others--most important, the person created by their reproductive activity, but other persons as well. Virtually nothing that people do has no effects on anyone, no matter how insignificant, and self-determination would be empty of moral importance if it were limited to such cases. Instead, the impact of people's actions on others is properly understood as a competing moral consideration that sometimes places limits on the exercise of self-determination. The appeal to self-determination will provide the strongest protections against interference by others, other things being equal, when the actions in question also have only minimal impacts on others.

This point is important for all aspects of reproductive freedom that involve creating and thereby affecting another being. It is especially important for a particular aspect of reproductive freedom--the choice of what kind of children to have. Shaping the nature of children greatly affects a person's own life and so is properly encompassed by self-determination. However, it is not primarily a matter of individual self-determination but as well and more importantly the determination of another. This is so both for choices about genetically-based conditions or traits viewed to be undesirable or harmful and for genetic screening or engineering designed to enhance an individual's genetic inheritance--whether it be sex selection or the much broader powers that may be available in the future.

Having and raising children is a central part of many people's lives, and self-determination lends significant support to parents shaping their children's genetic inheritance, just as it supports their shaping their children's character and lives in other ways during childrearing. The overall moral case for determining what another is like, however, even in the context of parent and child, is substantially weaker than the moral case based in self-determination for individuals shaping their own lives.

In most societies, parents are accorded significant discretion and control in the raising of their children, including decisions about education, religious exposure and training, and more generally the values passed on to children. Some significant discretion of this sort is necessary for whoever is assigned primary responsibility for the rearing of children. This parental self-determination is not unlimited, however, either in morality or the law. The fundamental interests of the child place moral limits on this parental self-determination, as is reflected in typical child abuse and neglect laws. Thus the interests of the child and of the person the child will become are one source of moral limits on this parental self-determination (United Nations 1959).

The more difficult issue is whether, and if so to what extent, society can legitimately claim a role in such decisions. The collective effect of individual decisions by parents to prevent undesired traits or to enhance desired traits may have a substantial impact on the nature of the overall society of which they are members. Moreover, the decisions do not solely, or even principally, affect the parents--their primary impact is on the nature of the persons created through this prevention or selection of genetically transmitted traits or conditions--that is, on who will be the future members of the society.

In a broad sense, parents help shape, though it is unclear and controversial to what extent, the nature of society in the future. Thus a pregnant woman's or parent's interest in self-determination, understood as in part the making of significant decisions about his or her own life, cannot establish an absolute right to decide whether to prevent or enhance genetically transmitted conditions. Because those decisions help shapte the nature of the society in which others will live, there is some case for collective societal decisionmaking. For instance, democratic decision procedures and public policy might define at least the broad parameters or limits within which choices to prevent or enhance particular genetically transmitted traits might be made as a part of the exercise of reproductive freedom.

The moral importance of reproductive freedom over a wide array of choices can thus be based in part on the moral importance of individuals' general interest in self-determination. But the greater the harm would be to another as a result of respecting a particular reproductive choice, the weaker is the overall moral case provided by self-determinism for respecting that choice. (What we have called here self-determination is often in the law called either privacy, as the courts in the United States have constructed the right of privacy, or a constitutionally protected liberty interest.)

Individual Good or Well-Being

A second line of moral argument in defense of reproductive freedom appeals to the contribution it makes to the welfare, well-being, or good of individuals (we shall usually use here only the notion of individual "good," though these concepts are not interchangeable in all contexts) whose reproductive freedom is respected. The precise form this argument takes will depend in part on the account of individual good used. It is common in the philosophical literature to distinguish three main types of theories of the good for persons. Each looks at what is intrinsically good or valuable in a life--that is, roughly, good independent of its consequences and relations to other things; many other things are instrumentally good because they lead to what is intrinsically good in a life.

Conscious experience theories hold that people's good consists of certain kinds of positive psychological states, often characterized as pleasure or happiness and the absence of pain or unhappiness. Preference or desire satisfaction theories of the good for persons hold that what is good is the satisfaction of people's desires or preferences. Finally, what can be called objective good theories deny that a person's good consists only of positive conscious experiences or desire satisfaction; they hold that some things are good for people even if they do not want them and will not obtain pleasure or happiness from them (Brock 1992; Griffin 1986). Although various objective good theories differ as to what is objectively good for persons, typical accounts appeal to the achievement of certain virtues or ideals of the person and having specific kinds of valuable experiences.

Many difficult and complex issues are involved in attempting to give a full and precise account of any of these alternative kinds of theory of the good for persons, and some of those issues have substantive implications for a defense of the moral value of reproductive freedom. Nevertheless, it is clear that there is at least a broad connection between people's good and securing their reproductive freedom on each of the main accounts of that good. Securing and respecting the various components of individuals' reproductive freedom that we just distinguished usually makes a positive overall contribution to their happiness, since competent individuals typically are the best judges of what reproductive choices will best promote their happiness. Moreover, when people's reproductive choices are blocked they usually experience displeasure and frustration. Likewise, respecting individual's reproductive freedom usually permits them to best satisfy their desires concerning reproduction. And finally, respecting individuals' reproductive freedom usually will promote some typical objective components of their good (for example, taking responsibility for important parts of life, and having deep personal relations, such as that between parent and child). Nevertheless, it is important to emphasize that each of the foregoing claims about the tendency of reproductive freedom to promote the good of persons (variously understood) is only plausible if accompanied by the qualification "usually" that we have given it.

This qualification implies that the contribution of the various components of reproductive freedom to persons' good cannot support an absolute or unlimited protection of or right to reproductive freedom. That is as it should be, because this ground of reproductive freedom--the appeal to a person's own good--can sometimes support paternalistic limitation of reproductive freedom. It is necessary to assess the contribution of a particular aspect of reproductive freedom to a particular individual's good in particular circumstances in order to determine what weight this moral defense of reproductive freedom should be given on a particular occasion. With that said, however, respecting most of the components of individuals' reproductive freedom distinguished above does usually promote their good, and in those cases this is one significant part of the overall moral case for respecting their reproductive freedom.

Equality of Expectations and Opportunity

The third moral argument in support of respecting reproductive freedom is based on a moral principle of equality. On the one hand, the equality defense best illuminates why some specific components of reproductive freedom just discussed but often not included within reproductive freedom are morally important components of it. On the other hand, some other components that we discussed seem not to be supported by the equality defense, and so their support must originate elsewhere.

The first step of the equality defense is the premise that whether someone is male or female is a morally irrelevant property of persons in the sense that it morally ought not affect people's fundamental social and economic expectations in life and their opportunity to attain desired positions and benefits.[1] In this respect gender is like race, and the premise about its moral irrelevance should be as morally uncontroversial as the analogous claim regarding race.

This premise is not a denial of natural differences between men and women, since it is a banal truism that only women get pregnant. This is a natural fact of biology that it is not now possible to change and by itself represents no unjust inequality. The unjust inequalities that women suffer are either forms of straightforward gender discrimination that disadvantage women or situations in which natural sexual differences, such as the fact that only women get pregnant, are related in ways subject to social change and control to other systematic social and economic disadvantages to women. And, of course, in most of the world today both these kinds of gender discrimination are common.

Reproductive freedom then serves equality in two important ways: first, it can help mitigate those unjust gender disadvantages that women suffer that are specifically tied to reproduction; second, it can help mitigate the effects of other forms of gender discrimination against women that are not tied specifically to reproduction.

To illustrate this relation between reproductive freedom and equality, consider the components of the reproductive freedom of women that involve, first, access to genetic testing to determine whether a fetus has a serious genetically transmitted disease that will prevent it from ever developing an independent life or having meaningful social relations with others, and, second, the choice of whether to abort a fetus found to have such a disease. Even with the best social, economic, and psychological supports, having and raising such a child typically has deep and far-reaching effects on its parents' lives, but especially on its mother's life, since women typically bear a disproportionate share of the burdens of childrearing.

Effective choice and control over whether to continue or terminate such a pregnancy gives women the opportunity to decide whether to undertake a disproportionate share of the burdens of having such a child. Other aspects of reproductive freedom also help women mitigate the effects of a variety of unjust gender-based inequalities on their lives. But reproductive freedom does not support gender equality only because it mitigates the effects of other injustices. There may be some ineliminable gender inequalities associated with reproduction that are not the consequence of any unjust social arrangements. Reproductive freedom gives women the choice of whether to accept those inequalities in their own lives.

The equality defense of reproductive freedom, like the self-determination defense, supports some aspects of reproductive freedom more clearly and persuasively than others. We have already mentioned how the choice about what kind of children to have can have substantial implications for the gender-based inequalities that will attend childbearing and childrearing. The connection between reproductive freedom and equality is most essential, however, in making clear why a variety of social and legal conditions and practices that form the social and legal context of reproduction and childrearing are properly considered an important part of reproductive freedom. A central purpose of these conditions and practices is either to prevent or to compensate for gender-based inequalities in expectations and opportunities that would otherwise attend reproduction. In weighing what should predominate in conflicts between reproductive freedom and the prevention of genetically transmitted harm, it is necessary to evaluate the extent to which the particular aspect of reproductive freedom in quesiton is supported by considerations of equality between men and women.

IV. Use of Genetic Information to Prevent Harm

In summary, our argument thus far in the chapter is that there are distinct components of reproductive freedom that have differential moral importance both generally and on specific occasions. There are also at least three distinct lines of moral support that apply in complex ways to these different components of reproductive freedom, grounded in self-determination, the promotion of a person's good, and equality, respectively. Our discussion of reproductive freedom thus far is not intended to support any simple, general conclusion about its nature and moral importance, but instead to unpack some of the complexities that must be attended to when weighing specific conflicts between reproductive freedom and prevention of genetically transmitted harms.

The remainder of the chapter addresses moral issues in the use of genetic information to prevent harm. More specifically, the focus will be on when individuals are morally required to acquire and/or use genetic information to prevent genetically transmitted harm to offspring, and on some of the moral problems raised by public policies to enforce those requirements.

In the foreseeable future, choices about prevention of genetic harms will usually be made by individuals, and so we consider them here in that context. Further into the future, larger-scale social programs of genetic engineering might become possible. Such programs might leave certain choices less in the hands of individuals or even deprive them of some choices altogether.

It should be emphasized that societal efforts to prevent genetically transmissible harms and the reproductive freedom of individuals are not necessarily or even usually in conflict. The vast majority of prospective parents have a direct and deep concern for the well-being of their prospective children and will voluntarily or even eagerly make use of available genetic information or interventions to prevent or remove harms to them. Most will do this out of simple concern for the well-being of their prospective children and not because they have decided that doing so is morally required or because public policy and the law encourage or require it.

In a variety of cases that now arise, however, and in more cases that will arise in the future, prospective parents will have one or another reason not to make use of genetic information or interventions to prevent harm to their prospective children, and so both they and public policy will need to decide when they are morally required to do so. This question will often arise in the context of genetic counseling, in which prospective parents request advice and guidance about these issues--requests that will make the traditional counseling norm of value-neutrality difficult to justify or maintain. Moreover, as a society we must address when, if ever, we should adopt policies that encourage in a variety of ways, or require by law, that individuals obtain and make use of genetic information and interventions to prevent harm to their prospective children and other related individuals.

Distinguishing Cases

In order to clarify the moral issues in the conflicts and trade-offs between reproductive freedom and the use of genetic information to prevent harm, several distinctions between different kinds of cases are important. Because these distinctions will require us to address a number of different, complex issues, it is useful at the outset to sketch them in broad outlines.

First, we need to distinguish cases in which the genetically transmitted disease or condition is so severe as to make the individual's life from that individual's perspective not worth living from those cases in which the harm is significant but still leaves the individual with a worthwhile life. (Cases in which the genetic intervention does not prevent a harm but is an enhancement that confers a benefit on the individual are discussed in Chapters Four and Six) A life not worth living is not just worse than most peoples' lives or a life with substantial burdens; it is a life that, from the perspective of the person whose life it is, is so burdensome and/or without compensating benefits as to make death preferable.

Second, we need to distinguish cases in which the genetic information is obtained or intervention is pursued before conception from cases in which it is obtained or pursued after conception of an affected fetus, but prenatally. And both of these need to be distinguished from cases in which information is obtained or intervention pursued postnatally.

Third, we need to distinguish cases in terms of the relative burdensomeness of the interventions to prevent the harm, as well as the relative seriousness of the harms to be prevented when the child will be left with a worthwhile life whether or not the intervention occurs; in both types of cases burdens and harms occur along broad spectrums in terms of their relative seriousness.

Last, we need to distinguish cases in which the genetically transmitted disease or condition can be corrected or prevented by some intervention either pre- or post-conception from cases in which the prospective parents can only conceive with a risk or certainty of genetically transmitting a harmful disease or condition. We will use these four distinctions and others to develop an ethical framework for addressing the ethical issues that arise in the use of genetic interventions to prevent harm.

For the many kinds of cases of genetically transmitted harms that can arise, two philosophical problems will be of special concern here. Both problems stem from apparent difficulties in applying conventional, commonsense, and philosophical accounts of harm and harm prevention to cases in which the only way the harmful condition can be avoided is for the affected individual never to exist at all--that is, never to be brought into existence. In these cases, the creation of an individual inextricably creates the harmful condition as well. Standard accounts of harm compare the condition of an individual before a putative harm has occurred with the condition of that same individual after the putative harm has occurred; the individual has been harmed only if he or she is worse off in the latter condition as a result of the adverse effect of an action or event on his or her interests. But when the only alternative to the putatively harmful condition is not to exist, or to have ever existed at all, there is no unharmed condition, because there is no unharmed individual to compare.

The first instance of this problem--cases of so-called wrongful life--has received special attention and engendered considerable perplexity in the law. Courts have worried whether it is even sensible to claim that an infant or child's quality of life is so bad that he or she would have been better off never having been born at all.

The second instance of the problem, and the philosophically more difficult one, concerns cases that we shall call wrongful disabilities, in which an individual has a significant genetically transmitted disability, but one that is not so serious as to make life not worthwhile. The disability could have been prevented by the child's mother, but only by conceiving at a different time and/or under different conditions, in which case she would have had a different child without the disability. (The claim that this would have been a different child does not commit us to personal identity being determined by genes, since the other child would have a different history in the world and other different properties as well as different genes.) But if the disabled child she did have has a worthwhile life from the child's own perspective, and the disability could only have been prevented by the child never having existed at all, then the child appears not to have been made worse off, and so not to have been harmed, by the disability. And if this is so, then it seems that if the mother does nothing to prevent transmission of the adverse genetic condition, she cannot have violated an obligation to prevent harm.

An adequate moral account of these two kinds of cases appears to require resources beyond those found either in commonsense moral thinking or conventional ethical theories. In wrongful life cases, we shall argue that courts that have held that the necessary moral judgments supporting wrongful life claims are not coherent or sound have been mistaken; conventional moral theories and accounts of harm do have the resources to warrant morally sound wrongful life judgments. In wrongful disability cases, we shall argue that while standard accounts of harm cannot be applied, those accounts can be revised or extended to fit the circumstances of wrongful disabilities; wrongful disability cases do in fact constitute serious moral wrongs. In each case, we can coherently weigh the harmful condition that would come to the conceived child against the reproductive freedom of the child's mother.

Post-Conception Interventions to Prevent Harms Compatible with a Worthwhile Life

We begin with a class of cases in which standard analyses of harm are essentially adequate. Here, the information about the genetic transmission of the harmful condition is acquired after conception, the intervention to prevent harm to the child will be done during pregnancy, and the harm to the child if not prevented would not be serious enough to make its life not worth living. Since these are cases of interventions affecting a fetus, it might be thought that they raise the very morally, politically, and legally contentious issue of the moral status of the fetus, which has so polarized the abortion controversy. But that would be a mistake. Whatever the moral status of the fetus at different points in its development, so long as the pregnant woman intends to carry it to term, it can be expected in time to become a full moral person with all the moral protections that includes. Therefore, concern for that person, not only for the fetus, provides the stimulus for post-conception harm prevention. (Feinberg 1986). Let us spell out and defend this claim.

We assume that the moral status of the child the fetus will become includes a moral claim (hereafter, we shall say a moral right, though we put the claim in terms of a moral right only for ease of exposition) expressed by the following principle:

M: Those individuals responsible for a child's, or other dependent person's, welfare are morally required not to let it suffer a serious harm or disability or a serious loss of happiness or good, that they could have prevented without imposing substantial burdens or costs or loss of benefits, on themselves or others.

Some principle like M underlies common moral views, as well as legal requirements, concerning parents' responsibilities to care for their children, including their responsibility to secure necessary medical care for them. Child abuse and neglect statutes that exist in all states make this a legal responsibility of parents and authorize state intervention to remove the child from the family if necessary in order to secure such care.

The requirement not to let one for whom one is responsible suffer "a serious loss of happiness or good" is less clearly a part of either common moral views or legal practice than the requirement to prevent serious harm or disability. Much ordinary moral thinking contains lesser (or even no) requirements to secure benefits than to prevent harms to others. But whatever the relative stringency of preventing harms versus securing benefits, M must be formulated to allow some weighing of harms prevented against benefits secured. In people's own lives they often cause, or do not prevent, a harm in order to secure a greater benefit. Likewise, in acting for others for whom one is responsible it is also often justified to cause, or not to prevent, a harm to them in order to secure a greater benefit for them. (For example, a parent may have to submit her child to the pain of a tooth extraction to prevent greater dental damage). M should be understood as requiring this weighing of harms prevented against benefits secured when both are in question.

There is an important feature of cases of prenatal interventions that may appear to make them significantly different morally speaking from typical cases of child abuse or neglect, and thus to make M's application to them problematic. This is that they can arise before the point at which many believe the fetus has become a moral person, and so a moral principle like M may be thought not to apply to the fetus. If the fetus is not yet a moral person, and so killing it is morally permissible, how can failure to prevent a much less serious harm be impermissible or wrong? Must we settle the extraordinarily contentious question of when the fetus becomes a person before we know when M begins to apply to it?

If we must, then there are also implications for another class of cases--actions that take place before the fetus is even conceived, but that result in predictable harms to it when or after it is conceived. If a fetus, which is often thought of as a potential person, is not morally protected by principles like M before it becomes a person, then surely before conception has taken place merely possible persons are likewise not morally protected. If the point is put in terms of rights, neither possible persons (before conception) nor potential persons (after conception) are commonly understood to be the kind of beings that can have moral rights.

The flaw in this reasoning is thinking that the harm to be prevented is a harm only to the fetus or, even more implausibly, only to a possible person before conception. In each case, the harm to be prevented is a harm that will come to the child that the fetus will later become, a child who will uncontroversially be a full moral person. The important difference in this harm is that it can only be prevented by actions that must be taken before the individual becomes a full person.

Put in terms of rights, failure to act earlier, when the child was a fetus, will violate the moral right that the child now has to have had the harm prevented when it was possible, earlier, to do so. The moral wrongness of actions that result in harms to distinct individuals in the future, over temporal distances, should not be any more problematic than the more familiar cases of wrongful actions that result in harm across spatial distances. Understood in this way, prenatal but post-conception genetic interventions are no different from interventions with born children intended to prevent harm to them. Principle M applies straightforwardly to both of them.

Just as with moral and legal issues about child abuse and neglect, applying principle M in concrete cases often will require difficult and controversial judgments about when the harms to be prevented are of sufficient seriousness that they are not outweighed by the burdens or costs imposed on its mother (and/or others) by the interventions necessary to prevent the harm, together with any other moral considerations counting against the interventions. Obviously, no one possesses, nor will possess in the future, any precise metric on which the harms prevented, the burdens imposed by the intervention, and other morally relevant considerations can all be measured and balanced. Two examples, however, will help make the issues more concrete.

When the prenatal interventions to prevent harm to the fetus and the child it will become involve invasive surgery on the mother with significant risks, her reproductive freedom and her right to make decisions about her own health care will outweigh most harms than can now be prevented in this way to the fetus and child. So she should be left free to decide.

Her responsibility to undergo surgery to prevent harm to the child would be weightier if she were responsible for the child needing intervention--for example if its condition resulted from her recklessly exposing herself to toxic substances during pregnancy. But even in an instance in which a woman would be morally required to accept an invasive intervention, it might be problematic for others to coerce her to do so.

In contrast, the burdens of the screening and special diet necessary for women to prevent the severe harms of mental retardation and other disabilities that would be caused by PKU disease in their children are sufficiently limited in comparison with the severity of the harms to the child to make the screening and diet morally required. Even confinement during part of a pregnancy might sometimes be morally justified if necessary in order to prevent this very serious harm to her child.

As new cases multiply in the future, there often will be factual disagreement about the consequences of intervening or failing to intervene for the fetus and child who would be affected by the intervention. For example, the degree of risk of passing on the disease or condition, as well as its likely severity, will often be uncertain and/or disputed. Similar disagreement will often also arise concerning how those who suffer the burdens of the intervention will be affected, most especially the pregnant woman. What medical risks to her does prenatal intervention pose, for example, and what would the short- and long-term emotional and psychological consequences be of public policy imposing such interventions against her wishes, and so forth?

Even when there is agreement about the likely consequences of possible alternative actions or policies, there will often be disagreement about the relative moral weight to be given the different consequences. What moral weight or importance does the particular aspect of her reproductive freedom at stake have, for example, and what moral weight or importance does her responsibility under a principle like M have?

Our earlier discussion of the different aspects of reproductive freedom together with their different moral bases was designed to provide a framework for addressing these questions in concrete cases. Different genetically transmitted diseases or conditions that might be prevented in a particular case must also be assessed for the relative importance of their effects on the child's well-being and opportunity over the the course of it's life.

Other things being equal, the more serious and probable the harm that might be prevented, the less serious and probable the risks or harmful effects on the fetus and/or others of doing so, and the less weighty the aspect of the mother's reproductive freedom that is at stake, the stronger the moral case for intervening to prevent the harm. At some point, preventing the harm will be morally required, although whether that point has been reached in a particular case sometimes will be morally controversial. There is no way to remove either the need for sensitive and careful judgment in particular cases or the ethically controversial nature of that judgment in balancing the genetically transmitted harms that might be prevented against the mother's claim to reproductive freedom.

Prevention of Harms Across Many Generations

The argument in the last section may seem to omit a crucial consideration special to the moral assessment of the prevention of genetically transmitted harms--their repeated transmission over successive generations. Broadening our perspective from the harm to the immediate individual fetus and the person it will become suggests vastly larger cumulative harms that might be prevented by any steps, such as nonconception, germline therapy, or abortion, that would block the transmission of harm to successive generations when they reproduce.

Viewing the genetically transmitted harm to be prevented from this longer-term perspective shifts our standpoint from that of the genetic counselor advising a woman regarding the harm to her fetus to concern with the vastly magnified harms to be prevented to successive individuals as genetically transmitted diseases or conditions are passed down across successive generations. Imagine, this argument asks, the enormous harms that would have been prevented if we could have stopped a disease like Huntington's chorea after the first genetic mutations that led to its appearance. This kind of concern was central to much eugenic rhetoric earlier in this century, as we saw in Chapter Two.

Even if we can rarely or never intervene at the outset of a genetic disease's appearance, intervening in any single case to prevent its transmission can prevent harms of great magnitude when viewed over long periods of generational transmission. If the concern is also with harms to society caused by the spread of the harmful condition over time, and not just with harms to a larger number of individuals, the concern is properly considered eugenicist. This broader and longer-term perspective suggests that intervening to prevent genetically transmitted diseases or conditions causing only quite minor harms to any one individual suffering them would be clearly morally required in order to prevent the vastly larger cumulative harms to individuals or society from their transmission across generations. Even aspects of reproductive freedom of fundamental moral importance might be outweighed by the great cumulative harms that could be prevented over time. This longer-term perspective might seem to warrant mandatory abortion or sterilization to stop the transmission of even minor harms. As we saw in Chapter Two, it was characteristic of eugenic thinking to take very seriously the cumulative effects of particular "dysgenic" reproductive acts.

There are at least three considerations that largely undermine the force of this argument. The first is uncertainty about whether the individual who will have the genetic disease or condition if it is not prevented would pass it on to future generations. (The condition could be prevented by the individual not being conceived, being aborted once conceived, being sterilized, or receiving germline therapy; we will stop spelling out these various means of preventing transmission, but shall simply speak of preventing it, although there are, of course, important moral differences in these different means of harm prevention.) Even if this individual has the harmful genetically transmitted disease or condition, it will still not be passed on to future generations if the person does not have children.

Moreover, typically only a risk, not a certainty, will exist of passing on the harmful gene(s) to any children the individual has. And these uncertainties about whether this individual will pass on the harmful genetically transmitted disease or condition to the next generation will exist again for each successive generation. Viewed from this longer generational perspective, it is also increasingly likely that treatments, cures, or other means of prevention will be developed for the disease or condition. Thus there are a variety of uncertainties about whether the harm will in fact be passed on across many generations.

The second factor undermining the argument that it is ethically required to prevent even minimally harmful genetic diseases or conditions is the problematic assignment of moral responsibility to the present generation for the potential harms caused to all future generations. Each successive generation of individuals with the harmful gene will have the choice of whether to pass on, or to risk passing on, the disease or condition to their children. If they choose to do so, the moral responsibility for that will rest with them, not the previous generation who passed on the disease or condition to them.

It is therefore problematic to assign moral responsibility to individuals in any one generation for harms that are passed on to all successive generations.

There is a third reason why the great cumulative harm from passing on indefinitely even minor genetically transmitted harmful diseases or conditions does not justify overriding fundamental aspects of the reproductive freedom of individuals who now have the harmful genes. The point concerns justice between generations and limits on the sacrifices that present generations should reasonably be expected to make in order to produce indefinitely large future benefits over an indefinitely long future, even though the benefit to any single future individual is very small.

In assessing what would be reasonable sacrifices or limitations of the reproductive freedom of individuals with harmful genes today for the benefit of future individuals, at least one important perspective is the comparison of the moral importance of the sacrifice of reproductive freedom that would be made by an individual today with the moral importance of the benefit that would be obtained by any future individual, not just with the cumulative future benefits. Only this one-by-one comparison of the sacrifices and benefits of individuals will tell us whether the distribution is fair to the individuals affected over time. It would be unfair to impose a very great sacrifice or limitation of reproductive freedom on the present generation in order to produce aggregate future benefits that are greater only because very small benefits to any one individual reach a great many individuals over an indefinite future. This has been called the "aggregation problem" in the literature on rationing between contemporaries, and has an analog in the economic literature on just savings rates across generations (Daniels 1993).

Pre- and Post-Conception Interventions to Prevent Harms Incompatible with a Worthwhile Life

In what have come to be known as wrongful life suits, parents have brought legal actions on behalf of their child against physicians or other health care professionals or institutions, charging that their child has been harmed by having been brought into existence and that it would not have existed except for the negligent conduct of those against whom the suit is brought. The cases typically involve either a failure to diagnose and inform the parents before conception about a risk that their child will have a devastating genetically transmitted condition, or a failure to determine and inform the parents after conception that the child has such a disease or condition. The defendant's action is not the cause of the child's harmful disease or condition, which is genetically caused, but it is the cause of the parents' either conceiving the child or failing to abort it, as a result of the defendant's negligence.

The special feature of these cases that distinguishes them from other negligence cases and that has vexed many of the courts confronting them is that the disease or condition is claimed to be so harmful and irremediable that it makes the child's life not worth living. Thus, the wrong done to the child is having been brought into existence or given life in this condition. Moreover, the genetically inherited conditions and diseases that typically have been the subject of wrongful life suits are incurable, irremediable, and cannot be prevented except by preventing the conception or birth of the individual with the condition or disease. So the wrong to the child is its very existence with the harmful condition, and the legal actions in wrongful life cases have maintained that except for the negligent actions of the defendants, the child would never have been conceived, or would have been aborted before birth.

The issue that has concerned the courts has principally been how existence itself could be a harm and so a wrong to an infant or child and, if it is, how to assess damages for it. As noted earlier, our principal concern is with the philosophical and moral claim that life with conditions like Lesch-Nyhan disease or Tay-Sachs disease is so burdensome and without compensating benefits to the individual with the disease that it is worse than never having existed at all. Life itself is a harm, and in turn a wrong, to an individual in that condition.

Some persons might challenge wrongful life claims along vitalist lines, on the grounds that life itself is always a great good, no matter what t