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 the quality of that life, and so can never be bad for or a harm, and in turn a wrong, to a person.  But for a small group of diseases or conditions like Lesch-Nyhan and Tay-Sachs, the existence of the person with the disease is so unremittingly awful that this vitalist position is difficult for most people to accept.

          While data, to our knowledge, do not exist regarding people's attitudes about life under such conditions, surely most people would choose not to conceive if told that their child would have such a devastating disease.  And if they did not believe abortion was wrong even in cases like this, surely most people would abort a fetus that they learned had such a disease.  Although their motivations would no doubt in part be self-regarding--their concern for the terrible burdens such a child would impose on them--they would almost certainly include concern for the child, for not imposing such an awful existence on it.  Since existence without the disease is not possible for such a child, the only alternative to the awful existence with the disease is never to bring the child into existence at all.

 

The Subject of Harm

There is a different and deeper source of the concern that wrongful life claims are incoherent.  The conventional understanding of a harmful action is an action that makes an individual worse off than he or she was before. That is, to say that an individual has been harmed, it must be possible to  compare the different conditions of the individual before and after the putatively harmful act is done.  But as noted earlier, the pre-harmed condition in wrongful life, the condition that is claimed to be better for the infant than its burdensome life, is the condition of not ever having existed at all.  Yet nonexistence is not any kind of condition, so it is clearly not a condition that could be better for the infant than the existence it has. When the alternative is nonexistence, there is no individual who is made worse off by being conceived and born.  Nonexistence is not a condition that is better for an individual than actual existence only in rare cases like having Lesch-Nyhan or Tay Sachs disease; it is no condition at all, and so not better or worse than any other condition.  So it seems that an individual cannot be harmed by receiving life itself, no matter how awful that life.  If the wrong in wrongful life is the harm done, as it is generally assumed to be, there can be no wrong of wrongful life in being given life.

          We shall examine later the assumption that being wronged requires being harmed, since it is central to what we have called wrongful disability cases, but for now we want to concentrate on the objection to wrongful life cases that there is no coherent sense to the claim of harm in them, since being harmed requires being made worse off then one otherwise would have been.  We begin by noting that in deciding whether to use or forgo life-sustaining medical treatment, patients typically make a comparison, which they take to be meaningful, of life in particular conditions with nonexistence. They ask themselves whether the best quality of life that they can expect in the future with life-sustaining treatment would be sufficiently poor that that life would be worse than no further life at all.  Typically, when patients do decide to forgo life-sustaining treatment, it is because they judge further life in their condition to be unwanted and not a benefit or a good.

          It also appears to be sensible to compare two overall lives such as the following: one life ends at the age of 80 after a full and independent life; the second life is identical with the first except that it extends beyond age 80 for three years, during which the person suffers both extreme cognitive disability with no possibility for any meaningful social interaction with others, and a painful, physically debilitating disease.  The only difference between these two lives is that one extends for a period of three years with an awful quality of life, while the other ends before this period.  In other words, the only difference is a comparison of three years of suffering versus nonexistence.

          Most people would almost certainly judge the first life the better life, a judgment reflected in the common belief that individuals who die "in their sleep" after a full life are lucky in comparison with others who die after a long, painful, debilitating illness.  Now this is still comparing two lives, one shorter and one longer, which may seem different than comparing total nonexistence with a short life.  It might be that adding three years of extreme cognitive disability and unremitting suffering to an otherwise satisfying and already complete life only makes that life worse because the new longer whole life is not better than the shorter whole life.  We need not compare a short, awful life with complete nonexistence in this case.  But setting aside effects on others, a short life with terrible burdens and no compensating benefits for the person whose life it is does seem an evil for that individual and not preferable to the alternative of nonexistence, even if the alternative of nonexistence makes the comparatives "better" or "worse" problematic.  Looking only at that life, and without comparing it to nonexistence, there is nothing in it to make it a good for the person whose life it is; instead, its nature makes it only a burden and torment. 

          Joel Feinberg has made essentially the same point with the fanciful scenario of a person dying and facing God, who makes him choose between being reincarnated with Tay-Sachs disease and immediate and permanent extinction; Feinberg quite plausibly claims that most people would choose immediate extinction (Feinberg 1986).  So although nonexistence is not a condition with any quality of life--good, bad, or indifferent--that could be better or worse than the quality of life of the child who is the subject of a wrongful life claim, that is not necessary to make sense of the judgment that such a child's quality of life could be so poor as to make it only a burden or evil for him or her.  The child in wrongful life cases has been given something--life--that because of its awful quality he or she should not have been given, and has thereby been wronged.

 

Rights and Existence

Wrongful life claims have also been challenged on the ground that they imply both that someone had a duty to an as-yet-nonexistent person and that the nonexistent person had a right not to be born in such a condition, which was violated by its being wrongfully brought into existence.  But, the objection goes, we cannot have duties to nonexistent beings, merely possible persons; nor can nonexistent persons have rights.

          We have already shown the mistake in this line of reasoning.  The right in question is the right of the child who does exist with a life not worth living not to have been brought into existence with such a life.  There is no right that a mere possible--that is, an as-yet-nonexistent--child has; nonexistent beings cannot have rights.  But any existing child can and does have a right not to have been brought into existence with a life not worth living.  The act of creating the person also creates the right that it violates--the person and his or her rights come into existence together.  That is why the act of creating the person is wrong.

          This right might seem problematic because in wrongful life cases it seems that the right is simultaneously violated when the child and it are brought into existence, but if such a child is not brought into existence, then the right does not exist and so also cannot be respected.  How can there be a right that it is not possible to respect, this objection asks?  The mistake here is thinking that only individuals who are conceived with lives not worth living have a right not to be born with such a life.  Instead, all individuals have such a right, and for the vast majority of individuals who are conceived with a life worth living, their right not to be born with a life not worth living is respected.  It is only for the very few individuals with a life not worth living that this right everyone has not to be born in such a condition is violated.

          It is not necessary to attribute to beings that do not yet exist rights not to be brought into existence at some future time with a life not worth living.  If the child never is brought into existence, there never is a being with the right that would have been violated had it been brought into existence with a life not worth living.  This is no different than other harms caused to a child by actions done before its conception.

          For example, if waste known to be hazardous to a developing fetus is negligently left in an area, and causes a child born several years later to have serious birth defects, the child has been wronged and his or her right not to be negligently harmed has been violated.  The child, and so the child's right, did not exist when the negligent act took place, and had the child never been conceived its right--which was later violated--never would have existed either.  The child's right not to be negligently harmed comes into existence with the child, and so can only exist and be violated if the child does come into existence.  That there will be no right, and so no rights violation, unless the child comes into existence need be no barrier to there being a right and a rights violation if and when the child does come into existence.

          Essentially the same point holds with regard to duties--wrongful life cases do not imply that there must be duties to nonexistent beings, only that there are duties to any existing child who has been wrongfully brought into existence in such conditions.  A person's action or inaction at one time violates a duty to, and the rights of, a child who exists at a later time only if that child comes into existence, thereby creating the harmful effect of the earlier action.  The unusual feature in a wrongful life case is that the action or inaction in question is bringing the child into existence.

          Wrongful life legal cases have typically been brought against physicians or laboratories that failed to diagnose either the risk of the child having a devastating disease or the fetus actually having that disease, in either case preventing the parents from making an informed choice not to conceive or to abort the affected child.  Our analysis makes clear that in principle the moral claim of wrongful life could as well be made against the parents if they knew before conception that their child would have such a disease, or knew after conception of the risk or certainty that their fetus did have such a disease, and yet allowed it to come into existence in that condition.  Suppose that their reason for failing to act in the post-conception case, however, was a moral belief that abortion is seriously wrong even when the fetus will have a life not worth living.  There is no inconsistency in believing that someone does not have a life worth living, but also believing that it would nevertheless be wrong to kill him or her. Such views are common in other contexts, for example when people believe that a very seriously disabled or dying patient does not have a life worth living, but that it would still be wrong to kill her without her consent.

          Others who do not believe abortion is wrong may still view the parents' choice not to abort as morally wrong, and a wrong to their child.  Should public policy and the law require so deeply intrusive an action as an abortion against the parents' own deeply held moral views, and allow civil or criminal charges against them for failure to do so?  These "pro-life" parents would deny that there are any post-conception wrongful life cases because the only way after conception to prevent a child to be born, even knowing it will have a life not worth living, is by aborting it, and they believe doing that is not morally permissible.  Its life may not be worth living, but it is not in this view a wrongful life.

          It is crucial for understanding the deep difficulty of this case for public policy to recognize that the conflict between a "pro-choice" and "pro-life" position is in an important respect even deeper than their disagreement about abortion generally.  Abortion is an issue about which some people acknowledge that the positions of others with whom they disagree nevertheless are not unreasonable, irrational, or simply mistaken.  They acknowledge that abortion is a moral issue about which reasonable people can and do disagree.  On many such issues there is good reason for public policy and the law to leave individuals free to act on their own convictions.  In matters of largely self-regarding personal preference, such as how to decorate one's house, this policy has much to recommend it.

          The controversy about abortion, of course, is so intractable and heated because it is different in several respects.  First, many people consider others with whom they disagree about abortion to be simply and seriously mistaken and wrong; it is not just a matter about which they believe reasonable people disagree.  Second, it is not a disagreement about a largely self-regarding action, but about an action viewed by one party as the murder of an innocent and defenseless person.  Pro-choice individuals may accept a public policy that lets persons have or not have abortions according to their own moral convictions about it, since this ensures that abortion is legally available to any woman who wants it.  But pro-life individuals who believe abortion is simply murder will not--nor should they, given these beliefs--accept that others should be legally permitted to choose it; doing so is not a neutral middle ground between pro-life and pro-choice positions.

          A public policy that permitted prosecution of a post-conception wrongful life case against a woman who allowed her child to be born with a life not worth living because she believed the only way to prevent that happening--an abortion--would have been deeply and seriously immoral would take the abortion dispute to an even more profound level.  Although public policy now permits women to obtain abortions that pro-life individuals consider clearly wrong, it at least does not require that pro-life individuals themselves have abortions.  Requiring a pregnant pro-life woman in a post-conception wrongful life case to have an abortion to avoid a charge of wrongful life would do exactly that.  On the other hand, in the pro-choice perspective, according to which abortion is not seriously wrong, preventing wrongful life by abortion is also a matter of protecting an innocent, defenseless third party from the great wrong of being born with a life so dominated by suffering and without compensating goods that it is a life not worth living.

          It has long been clear that a public policy on abortion neutral between and acceptable to both pro-choice and pro-life positions is elusive.  There is even less reason to expect that such a policy is possible about post-conception cases of wrongful life--moral conflict about abortion drives an even deeper wedge, blocking a mutual compromise over wrongful life.  However, this is a book about some moral and philosophical problems raised by advances in genetics, not about abortion, and so we limit ourselves to showing the connections between the issues of the prevention of genetic disease, wrongful life and abortion, but cannot pursue the moral and policy complexities of abortion itself.

 

Public Policy and Wrongful Life Issues

It is perhaps fortunate that, despite the great expansion of genetic information that will be available in the future both from pre-conception testing for genetic risks to potential offspring and from prenatal diagnosis of the genetic condition of a fetus, public policy may be able largely to avoid the most contentious and intractable wrongful life issues for at least two reasons.  First, only a very small proportion of genetic abnormalities and diseases are both compatible with life and also so severe as to result in the affected child having a life not worth living.  Second, courts and legislatures are likely to continue to be reluctant to permit wrongful life legal suits, both because damages covering the child's medical and extra care expenses can usually be obtained by a suit brought in the name of the parents instead of a wrongful life suit in the name of the child, and because uncertainty exists about how to assess damages for wrongful life.  But regardless of what occurs in the courts, moral choices about whether conceiving a child or carrying a pregnancy to term would constitute an action of wrongful life will be increasingly faced in the future by parents or would-be parents.

          A complicating factor is that the woman or couple making the choice will often face only a risk, not a certainty, that their child will not have a life worth living, and that risk can vary from very low to approaching certainty.  Whether it is morally wrong to conceive in the face of such risks will depend in part on the woman's willingness and intention to do appropriate prenatal genetic testing and to abort her fetus if it is found to have a disease or condition incompatible with a worthwhile life.

          As noted above, pursuing the moral complexities of abortion would take us too far afield here. Nevertheless, suppose, as the authors of this book believe, that the fetus at least through the first two trimesters is not a person and so aborting it then is morally permissible.  Aborting a fetus found during the first two trimesters to have a disease that would make life a burden to the child prevents the creation of a person with a life not worth living; no wrongful life then occurs, so there is no question of moral wrong-doing.  Even conceiving when there is a relatively high risk of genetic transmission of a disease incompatible with a life worth living could be morally acceptable so long as the woman firmly intends to test the fetus for the disease and to abort it if the disease is present.

          On the other hand, a woman may intend not to test her fetus and abort it if such a disease is present, either because she considers abortion morally wrong or for other reasons.  In that case, the higher the risk that her child will have a genetic disease or condition incompatible with a life worth living, the stronger the moral case that she does a serious moral wrong to that child in conceiving it and carrying it to term.

          If a mother or anyone else knowingly and responsibly caused harm to an already born child so serious as to make its life no longer worth living, that would constitute extremely serious child abuse and be an extremely serious moral and legal wrong.  In that case, however, the child would have had a worthwhile life that was taken away by whomever was guilty of the child abuse; the wrong to the child then is depriving it of a worthwhile life that it otherwise would have had.  That is a different and arguably more serious wrong than wrongful life, where the alternative to the life not worth living is never having a life at all, and so not having a worthwhile life taken away.  The wrong in nearly all cases of wrongful life is bringing into existence a child who will have a short life dominated by severe and unremitting suffering--that is, being caused to undergo that suffering without compensating benefits.

          How high must the risk be of a child having a genetic disease incompatible with a worthwhile life be for it to be morally wrong for the parents to conceive it and allow it to be born?  There is, of course, no precise probability at which the risk of the harm makes it morally wrong to conceive or not to abort; different cases fall along a spectrum in the degree to which undertaking the risk is morally justified.  How seriously wrong, if a wrong at all, it is to risk the conception and birth of a child with such a life will depend on several factors.  How bad is the child's life, and in particular how severe and unremitting is its suffering?  How high is the probability of the child having a genetic disease incompatible with a worthwhile life?  How weighty are its parents' interests in having the child--for example, is this likely its parents' only opportunity to become parents, or are they already parents seeking to have additional children?  How significant is the possibility of the parents having an unaffected child if this pregnancy is terminated and another conception pursued?  How willing and able are the parents to support and care for the child while it lives?

          These factors, and no doubt others unique to specific cases, will determine how strong the moral case is against individuals risking having a child who will not have a life worth living.  It is worth underlining that any case for the wrongness of parents conceiving and bringing to term such a child depends on their having reasonable access to genetic testing, contraception, and abortion services, and this can require public provision and funding of these services for those who otherwise cannot afford them.

          We hope that our analysis so far makes it clear why we believe that there are some cases, albeit very few, in which it would be clearly and seriously morally wrong for individuals to risk conceiving and having such a child.  However, use of government power to force an abortion on an unwilling woman would be so deeply invasive of her reproductive freedom, bodily integrity, and right to decide about her own health care as to be virtually never morally justified.  Allowing the child to be born and then withholding life support even over its parents' objections would probably be morally preferable.  The government's doing this forcibly and over the parents' objections would be extraordinarily controversial, both morally and legally, but in true cases of wrongful life, the wrong done is sufficiently serious as to possibly justify doing so in an individual case.  However, at the present time and as a practical matter, the common and strong bias in favor of life, even in the face of serious suffering, makes it nearly inconceivable that public policy might authorize the government forcibly to take an infant from its parents, not for the purpose of securing beneficial treatment for it, but instead to allow it to die because it did not have a worthwhile life. Moreover, the risk of abuse of such a governmental power to intervene forcibly in reproductive choices to prevent a wrongful life is too great to warrant granting that power.

    There is a stronger moral case for the use of government coercive power to prevent conception in some wrongful life cases.  Similar power is now exercised by government over severely mentally disabled people who are sterilized to prevent them from conceiving.  In such cases, the individual sterilized is typically deemed incompetent to make a responsible decision about conception, as well as unable to raise a child.  Forced sterilization of a competent individual is more serious morally, but the harm to be prevented of wrongful life is more serious than the harm prevented in typical involuntary sterilization cases where the child would have a worthwhile life if raised by others. Nevertheless, the historical abuses of "eugenic sterilizations" discussed in Chapter Two are enough to warrant not giving government the coercive power to prevent wrongful life conceptions unless their occurence was very common and widespread. Wrongful life conceptions are sufficiently uncommon, and practical and moral difficulties in using the coercive power of government to prevent them sufficiently great, to rule out policies that prevent people from conceiving wrongful lives. Coercive government intrusion into reproductive freedom to prevent wrongful life would be wrong.

 

Pre-Conception Interventions to Prevent Conditions Compatible with a Worthwhile Life

The Human Genome Project and related research will produce information permitting genetic screening for an increasing number of genetically transmitted diseases, or susceptibilities to diseases and other harmful conditions.  In the foreseeable future, our capacities for pre-conception and prenatal screening for these diseases and conditions will almost certainly far outstrip our capacities for genetic or other therapy to correct for the harmful genes and their effects.  The vast majority of decisions faced by prospective parents, consequently, will not be whether to pursue genetic or other therapy for their fetus or child, but instead whether to test for particular genetic risks and/or conditions and, when they are found to be present, whether to avoid conception or to terminate a pregnancy.  Moreover, the vast majority of genetic risks that will be subject to testing will not be for conditions incompatible with a life worth living--the wrongful life cases--but rather for less severe conditions compatible with having a life well worth living. 

          These genetically transmitted conditions and diseases will take different forms.  Sometimes their disabling features will be manifest during much of the individual's life, but still will permit a worthwhile life, as with most cases of Down syndrome, which is caused by a chromosomal abnormality.  Sometimes the disease or condition will result in significant disability and a significantly shorter than normal life span, but not so disabling or short as to make the life not worth living, as with cystic fibrosis.  Sometimes the disease or condition, although devastating in its effects on the afflicted individual's quality of life, will only manifest symptoms after a substantial period of normal life and function, as with Huntington's chorea and Alzheimer's dementia.

          When the genetically transmitted conditions could and should have been prevented, they will constitute what we have called cases of wrongful disability.  But in which cases will the failure to prevent a genetically transmitted disability be morally wrong?  Again, different cases fall along a spectrum in  the degree of moral justification for undertaking or not undertaking to prevent the disability.

          Whether failure to prevent a disability is wrong in specific cases will typically depend on many features of that case.  For example, what is the relative seriousness of the disability for the child's well-being and opportunities?  What measures are available to the child's parents to prevent the condition--such as abortion, artificial insemination by donor, or oocyte donation, and how acceptable are these means to the prospective parents?  Is it possible, and if so how likely, that they can conceive another child without the disabling condition, or will any child they conceive have, or be highly likely to have, the condition?  If the disability cannot be prevented except by not conceiving at all, do the couple have alternative means, such as adoption, of becoming parents?  When the condition can be prevented or its adverse impact compensated for, what means are necessary to do so?

          These and other considerations can all bear on the threshold question: is the severity of a genetically transmitted disability great enough that particular parents are morally obligated to prevent it, given the specific means necessary for them to do so; or is it sufficiently limited and minor that it need not be prevented, but is instead a condition that the child can reasonably be expected to live with?

          Different prospective parents will answer this threshold question differently because they differ about such matters as the burdensomeness and undesirability of particular alternative methods of reproduction that may be necessary to prevent the disability, the seriousness of the impact of the particular disability on a person's well-being and opportunity, aspects of reproductive freedom such as the importance of having children and of having biologically related as opposed to adopted or only partially biologically related children, the extent of society's obligation and efforts to make special accommodations to eliminate or ameliorate the disability, and their willingness to assume the burdens of raising a child with the disability in question.

          Because there are these multiple sources of reasonable disagreement bearing on the threshold question, and because the aspects of reproductive freedom at stake will usually be of substantial importance, public policy should usually permit prospective parents to make and act on their own judgments about whether they morally ought to prevent particular genetically transmitted disabilities for the sake of their child.  But there is a systematic objection to all pre-conception wrongful disability cases that must be met in order to clear the way for individual judgments about specific cases.

          To fix attention on the general problem in question, which is not restricted to cases of genetically transmitted disease, let us imagine a case, call it P1, in which a woman is told by her physician that she should not attempt to become pregnant now because she has a condition that is highly likely to result in moderate mental retardation in her child.  Her condition is easily and fully treatable by taking a quite safe medication for one month.  If she takes the medication and delays becoming pregnant for a month, the risk to her child will be eliminated and there is every reason to expect that she will have a normal child.  Because the delay would interfere with her vacation travel plans, however, she does not take the medication, gets pregnant now, and gives birth to a child who is moderately retarded.

          According to commonsense moral views, this woman acts wrongly, and in particular, wrongs her child by not preventing its disability for such a morally trivial reason, even if for pragmatic reasons many people would oppose government intrusion into her decision.  According to commonsense morality, her action is no different morally than if she failed to take the medicine in a case, P2, in which the condition is discovered, and so the medicine must be taken, after conception and when she is already pregnant.  Nor is it different morally than if she failed to provide a similar medication to her born child, in a case, P3, if doing so is again necessary to prevent moderate mental retardation in her child.  It is worth noting that in most states in this country, her action in P3 would probably constitute medical neglect, and governmental child protection agencies could use coercive measures, if necessary, to ensure the child's treatment.

          This suggests that it might only be because her reproductive freedom and her right to decide about her own health care are also involved in P1 that we are reluctant to coerce her decision, if necessary, there as well.  On what Derek Parfit has called the "no difference" view, the view of commonsense morality, her failure to use the medication to prevent her child's mental retardation would be equally seriously wrong, and for the same reason, in each of the three cases (Parfit 1984).  But her action in P1, which is analogous in relevant respects to pre-conception genetic screening to prevent disabilities, has a special feature that makes it not so easily shown to be wrong as commonsense morality might suppose.

          What is the philosophical problem at the heart of wrongful disability cases like P1?  As with wrongful life cases, in which the necessary comparison of life with nonexistence is thought to create both philosophical and policy problems, so also in wrongful disability cases do the philosophical and policy problems arise from having to compare a disabled existence with not having existed at all.  But the nature of the philosophical problems in wrongful life and wrongful disability cases are in fact quite different.  The philosophical objections we considered to wrongful life cases centered on whether it is coherent to compare an individual's quality of life with never having existed at all--that is, with non-existence--and whether merely possible persons can have moral rights or be owed moral obligations.  In wrongful disability cases, a person's disability uncontroversially leaves him or her with a worthwhile life.  The philosophical problem, as noted earlier, is how this is compatible with the commonsense view that it would be wrong not to prevent the disability.

          The special difficulty in wrongful disability cases is that it would not be better for the person with the disability to have had it prevented, since that could only be done by preventing him or her from ever having existed at all.  Preventing the disability would deny the disabled individual a worthwhile, although disabled, life.  That is because the disability could only have been prevented either by conceiving at a different time and/or under different circumstances (in which case a different child would have been conceived) or by terminating the pregnancy (in which case this child also never would have been born, although a different child may or may not have been conceived instead).  None of these possible means of preventing the disability would be better for the child with the disability--all would deny him or her a worthwhile life.

          But if the mother's failure to prevent the disability did not make her child worse off than he or she would have been without the intervention, then her failure to prevent it seems not to harm her child.  And if she did not harm her child by not preventing its disability, then why does she wrong her child morally by failing to do so?  How could making her child better off, or at least not worse off, by giving it a life worth living, albeit a life with a significant disability, wrong it?  A wrong action must be bad for someone, but her choice to create her child with its disability is bad for no one, so she does no wrong.  Of course, there is a sense in which it is bad for her child to have the disability, in comparison with being without it, but there is nothing the mother could have done to enable that child to be born without the disability, and so nothing she does or omits doing is bad for her child.

          So actions whose harmful effects would constitute seriously wrongful child abuse if done to an existing child are no harm, and so not wrong, if their harmful effects on a child are inextricable from the act of bringing that child into existence with a worthwhile life!  This argument threatens to undermine common and firmly held moral judgments, as well as public policy measures, concerning prevention of such disabilities for children.

 

Actual Versus Possible Persons

David Heyd has accepted the implications of this argument and concludes that in all of what he calls "genesis" choices--that is, choices that inextricably involve whether a particular individual will be brought into existence--only the interests of actual persons, not those of possible persons such as the disabled child in case P1, are relevant to the choice (Heyd 1992).  So in case P1, the effects on the parents and the broader society, such as the greater childrearing costs and burdens of having the moderately retarded child instead of taking the medication and having a normal child a month later are relevant to the decision.  But the effects on and interests of the child who would be moderately retarded are not relevant.  In cases P2 and P3, on the other hand, Heyd presumably would share the commonsense moral view that the fundamental reason the woman's action would be wrong is the easily preventable harm that she allows her child to suffer; in these situations, the preventable harm to her child is the basis of the moral wrong she does her child. 

          In Parfit's "no difference" view, the woman's action in P1 is equally wrong, and for the same reason, as her action in P2 and P3.  We share with Parfit, in opposition to Heyd, the position that the woman's action in P1 is wrong because of the easily preventable effect on her child.  But we do not accept the "no difference" thesis.  We will suggest a reason why her action in P1 may not be as seriously wrong as in P2 or P3, and also suggest that the reason her action is wrong in P1 is similar but nevertheless importantly different than the reason it is wrong in P2 and P3.

          As Parfit notes, the difficulty is identifying and formulating a moral principle that implies that the woman's action in P1 is seriously wrong, but does not have unacceptable implications for other cases.  Before proceeding further, we must emphasize that we cannot explore this difficulty fully here.  The issues are extraordinarily complex and involve testing the implications of such a principle in a wide variety of cases outside of the genetic context that is our concern here (for example, in population policy contexts and, in particular, avoiding what Parfit calls the "Repugnant Conclusion" and explaining what he calls the "Asymmetry").  Its relationship to other principles and features of a moral theory must also be explained, including that to the principle applicable to P2 and P3 (Parfit 1984).

          The apparent failure to account for common and firmly held moral views in the genetics cases of wrongful disabilities like P1 constitutes one of the most important practical limitations (problems of population policy are another) of traditional ethical theories and of their principles of beneficence--doing good--and nonmaleficence--not causing or preventing harm.  Where the commonsense moral judgment about cases like P1 is that the woman is morally wrong to go ahead and have the disabled child instead of waiting and having a normal child, the principles of traditional ethical theories apparently fail to support that judgment.  New or revised moral principles appear to be needed.  What alternatives and resources, either within or beyond traditional moral principles or theories, could account for and explain the wrong done in wrongful disability cases?

 

Person-Affecting Moral Principles

Perhaps the most natural way to account for the moral wrong in wrongful disability cases like P1 is to abandon the specific feature of typical moral principles about obligations to prevent or not cause harm which generates difficulty when we move from standard cases of prevention of harm to existing persons, as in P3, to harm prevention in genesis cases like P1.  That feature is what philosophers have called the "person-affecting" property of principles of beneficence and nonmaleficence.  Recall that earlier we appealed to principle M: Those individuals responsible for a child's, or other dependent person's, welfare are morally required not to let her 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.

          The person-affecting feature of M is that the persons who will suffer the harm if it is not prevented and not suffer it if it is prevented must be one and the same distinct individual.  If M is violated, a distinct child or dependent person is harmed without good reason, and so the moral wrong is done to that person.  Since harms to persons must always be harms to some person, it may seem that there is no alternative to principles that are person-affecting, but that is not so.  The alternative is clearest if we follow Derek Parfit by distinguishing "same person" from "same number" choices.

          In same person choices, the same persons exist in each of the different alternative courses of action from which an agent chooses.  Cases P2 and P3 above were same person choices (assuming in P2 that the fetus is or will become a person, though that is not essential to the point)--the harm of moderate retardation prevented is to the woman's fetus or born child.  In same number choices, the same number of persons exist in each of the alternative courses of action from which an agent chooses, but the identities of some of the persons--that is, who exists in those alternatives--is affected by the choice.  P1 is a same number but not a same person choice--the woman's choice affects which child will exist.  If the woman does not take the medication and wait to conceive, she gives birth to a moderately retarded child, whereas if she takes the medication and waits to conceive, she gives birth to a different child who is not moderately retarded.

          The concept of "harm," arguably, is necessarily comparative, and so the concept of "harm prevention" may seem necessarily person-affecting; this is why harm prevention principles seem not to apply to same number, different person choices like P1.  But it would be a mistake to think that non-person-affecting principles, even harm prevention principles, are not coherent.  Suppose for simplicity that the harm in question in P1 from the moderate retardation is suffering and limited opportunity.  Then in P1, if the woman chooses to have the moderately retarded child, she causes suffering and limited opportunity to exist that would be prevented and not exist if she chooses to take the medication and wait to conceive a different normal child.  An example of a non-person-affecting principle that applies to P1 is:

          N:  Individuals are morally required not to let any child or other dependent person for whose welfare they are responsible experience serious suffering or limited opportunity or serious loss of happiness or good, if they can act so that, without affecting the number of persons who will exist and without imposing substantial burdens or costs or loss of benefits on themselves or others, no child or other dependent person for whose welfare they are responsible will experience serious suffering or limited opportunity or serious loss of

     happiness or good. 

          Any suffering and limited opportunity must, of course, be experienced by some person--they cannot exist in disembodied form--and so in that sense N remains person-affecting.  But N does not require that the same individuals who experience suffering and limited opportunity in one alternative exist without the suffering and limited opportunity in the other alternative; it is a same number, not same person, principle.  N allows the child who does not experience the suffering and limited opportunity to be a different person from the child who does; that is why the woman's action in P1 is morally wrong according to N, but not according to M.  If the woman in P1 does take the medication and wait to conceive a normal child, she acts so as to make the suffering and limited opportunity "avoidable by substitution," as Philip G. Peters, Jr. has put it (Peters 1989).

          A different way of making the same point is to say that this principle for the prevention of suffering applies not to distinct individuals, so that the prevention of suffering must make a distinct individual better off than he or she would have been, as M requires, but to the classes of individuals who will exist if the suffering is or is not prevented, as N does (Peters 1989; Bayles 1976).  Assessing the prevention of suffering by the effect on classes of persons, as opposed to distinct individuals, also allows for avoidability by substitution--an individual who does not suffer if one choice is made is substituted for a different person who does suffer if the other choice is made.  A principle applied to the classes of all persons who will exist in each of two or more alternative courses of action will be a non-person-affecting principle.

          The discussion above referred only to the prevention of harm or loss of opportunity because that is the focus of this chapter. However, it should be noted that N allows, for the same reasons as does M, the weighing of securing happiness or good against preventing suffering and loss of opportunity. If it did not, but required only preventing serous suffering, then N would require not creating a child who would experience serious suffering, but also great happiness and good, in favor of crreating a child who would suffer less, but experience no compensating happiness or good, even though the latter child on balance would have a substantially worse life. We note as well that we have not defined "serious" as it functions in either M or N; it is difficult to do so in a sufficiently general yet precise way to make the application of the principle simple and straightforward for a wide range of cases. Judgment must be used in applying N. The seriousness of suffering and loss of opportunity, or loss of happiness and good, that could be prevented must be assessed principally in light of their potential impact on the child's life, the probability of that impact, and the possibility and probability of compensatory measures to mitigate that impact. Applying N requires judgment as well regarding what are "substantial burdens or costs, or loss of benefits, on themselves or others."  For example, how serious are possible moral objections by the parents to the use of abortion, and how great are the financial costs, or medical risks of having an alternative child using assisted reproduction technologies, and so forth?

          We do not claim that all moral principles concerning obligations to prevent harm, or of beneficence and nonmaleficence more generally, are non-person-affecting, and so we do not reject principle M.  In typical cases of harm where a distinct individual is made worse off, the moral principles most straightforwardly applicable to them are person-affecting.  Our claim is only that an adequate moral theory should include as well non-person-affecting principles like N.  How these principles are related, as well as what principles apply to different number cases in a comprehensive moral theory, involve deep difficulties in moral theory that we cannot pursue here.  In this respect, we do not propose a full solution to the non-identity problem.

 

Doing Wrong Versus Wronging a Person  

          Even acknowledging these limitations in our proposal for  avoiding the non-identity problem, there are at least two apparent difficulties with it that need to be explored further.  The first is that it does not account for the important aspect of the commonsense moral judgment about P1 that the woman specifically wrongs her child by not preventing its disability; her child is the victim of her wrong, and so has a moral grievance against her.  But according to N, the disability should not have been prevented for the sake of that child, since doing so would have made that child worse off, or at least no better off (it would never have had its worthwhile life).  Rather, according to N, the disability should have been prevented for the sake of less overall suffering and limited opportunity, or for the sake of the class of persons who would have existed if the suffering and limited opportunity had been prevented.

          Joel Feinberg has argued that moral rights provide individuals with moral standing as a source of special moral claims against others that they respect those rights and as a source of special moral complaints against others who violate those rights.  (Feinberg, 1970). In typical cases of causing or failing to prevent harm, like P3, person-affecting principles like M also correctly direct us to the victim who has suffered the harm, and who has a special moral complaint against the individual who violated M by causing or not preventing the harm.  That is why standard accounts of harm as well as standard moral principles concerning our obligations to prevent or not to cause it take a person-affecting form.  Does this imply that non-person-affecting principles like N are inadequate in cases like P1?

          We believe it does not because we believe the common intuition that in a case like P1 the woman wrongs her child should, on reflection, be abandoned.  In P1, the child who suffers the moderate retardation is not a victim she has made worse off than he or she would have been.  So her child does not have a special moral complaint against her for her failure to prevent harm to him that our moral principles must account for.  Her child cannot claim to have a special complaint against the mother, because the child is better off, or at least not worse off, as a result of her not meeting her obligation under N.  In P1, and in wrongful disability cases more generally, there is no victim with a special moral complaint from having been made worse off as a result of the woman's action, and so no need for a person-affecting harm prevention principle, such as a moral right not to be harmed, to direct us to the standpoint of a victim of the harm.

          This suggests that non-person-affecting principles like N may not only be adequate for cases like P1, but that they are indeed preferable there to person-affecting principles like M precisely because they do not direct us to the special standpoint and complaint of a victim who has been made worse off.  Moral principles applicable to P1 and other wrongful disability cases should not direct us to a victim in that way because there is no victim who has been made worse off and who therefore has a special complaint.  Abandoning person-affecting principles of beneficence and nonmaleficence to account for wrongful disabilities may thus be a promising approach to them, especially if reflection on such cases leaves us confident that the woman in P1 acts wrongly, but weakens our initial confidence that she also wrongs her child in letting it be born disabled.

          The belief that she wrongs her child may be further weakened by reflection back on wrongful life cases.  We argued that wrongful life occurs only when the child has a life that is so bad overall as to not be worth living, a life that is worse than no life at all.  That is the correct threshold for the mother having wronged her child in conceiving and/or carrying it to term while knowing how bad its quality of life would be.  But since in P1 her child's quality of life does not fall below that threshold and could also be prevented only by not conceiving it, or by terminating her pregnancy after it had been conceived, she does not wrong it by allowing it to be born.  She does act wrongly, but nevertheless wrongs no one, as N correctly implies; there is no wrong to her disabled child nor any violation of its rights that our moral principles must account for.

          Resistance to this view, we believe, probably comes principally from the persistent presence of the disability that the child in P1 has.  But if a child suffered a similar disability from natural causes and the disability could only have been prevented at the cost of the child's life, no one would insist that the existence of the disability implied that someone who could have prevented it had wronged the child by not doing so.  When the disability arises from natural causes, no one need have acted wrongly, whereas in P1 the woman does act wrongly.  But in neither case is the child wronged by the fact that its disability was not prevented at the cost of its life.  We conclude that the first apparent difficulty with abandoning standard person-affecting moral principles of nonmaleficence in wrongful disability cases--the fact that they fail to identify a victim who has been wronged--in favor of impersonal principles like N is no difficulty after all.

          It is worth pointing out one implication of our argument that moral principles that best fit the features of wrongful disability cases will be non-person-affecting.  Others have attempted to solve Parfit's non-identity problem by seeking to show that standard person-affecting principles can be successfully applied to it, and so, by implication, to wrongful disability cases like P1.  For example, James Woodward has argued that the general principle implicit in the formulation of the non-identity problem and in our statement of the problem posed by case P1--that one individual's action cannot wrong another person unless that other person is overall worse off as a result of the action--is false.  To take Woodward's example: an African American refused an airline ticket by a racist clerk has suffered an injustice and been wronged even if the plane the person was barred from crashes, killing all the passengers (Woodward 1986; Parfit 1986).

          Woodward's argument suggests that an appeal to moral rights may be possible in cases of wrongful disability like P1 because moral rights protect specific interests, and so a person's moral right can be wrongly violated even if the violation does not harm the person by making him or her overall worse off.  What moral right of the child would be violated in P1 is not clear, but Woodward's argument shows that an appeal to a moral right of the child in case P1 might explain and characterize the wrong its mother does the child.  Woodward takes it to be an advantage of his account that it both shows how the woman wrongs her child and how her child suffers a loss by her action.

          Moral rights principles are person-affecting moral principles, and so no appeal to non-person-affecting principles like N would be necessary if Woodward's account is correct.  We shall not pursue the details of Woodward's argument here, but even if he is correct that standard accounts of moral rights can be applied to cases of wrongful disability like P1, our argument has been that person-affecting moral principles will mischaracterize the wrong done in such cases.  The very features of person-affecting principles that Woodward takes to be their advantage--that they make the wrong a wrong done to the child and the loss from the wrong a loss suffered by the child--we have argued mischaracterize wrongful disability cases.  Non-person-affecting principles correctly fit wrongful disability cases because the non-identity problem at the heart of those cases makes the wrong that is done not done to the child and the disability not a loss suffered by anyone.  No person-affecting moral principles will correctly fit wrongful disability cases.

 

The Place of Non-Person Affecting Principles in an Overall Moral Theory

          The second apparent difficulty with our appeal to a non-person-affecting principle like N for wrongful disabilities concerns its place in an overall moral theory.  Our point is not that standard person-affecting principles of beneficence and nonmaleficence should be rejected in favor of non-person-affecting principles like N.  Typical cases of harm prevention and rights' violations are properly assessed with standard person-affecting principles like M.  Moreover, not preventing the same disability to a born child, as in case P3, may be more seriously wrong than not preventing it in a genesis case such as P1.  This is because in P3 there is a victim who has been wronged and who can correctly think that his or her life could have been better if the mother had prevented the disability.  This grievance present in P3, but not in P1, is a reason for rejecting the "no difference" thesis regarding P1 and P3; not only do different principles apply to them, but P3 is more seriously wrong.

          Our argument for the non-person-affecting principle N is only that it is needed, in addition to the person-affecting principle M, for cases like P1.  How person-affecting and non-person-affecting principles are coherently and consistently combined in a comprehensive moral theory is an important unsolved problem (McMahon 1996).

          A further problem concerns whether, and if so how, non-person-affecting principles like N can be extended from same number cases, in which they give us the desired result, to different number cases, where they have ethically problematic implications.  Some of these implications can be indicated, but not explored here.  The intuitive point underlying principle N is that it is good to prevent suffering and promote happiness even if doing so reduces no person's suffering and increases no person's happiness.  But in different number cases that implies Parfit's Repugnant Conclusion:

          For any possible population of at least 10 billion people, all with a very high quality of life, there must be some much larger imaginable population whose existence, if other things are equal, would be better, even though its members have lives that are barely worth living.

          Extending a principle like N to cases with different numbers of persons would imply that we should increase total happiness slightly by vastly increasing the population, even though we thereby make every existing person much worse off.  Only person-affecting principles seem likely to avoid unacceptable implications like the Repugnant Conclusion, since only they require that a reduction in suffering or an increase in happiness be to a distinct individual.  No comprehensive theory--Parfit calls it theory X to signify an as-yet-unidentified theory--has been identified that adequately accounts for both same number and  different number cases.

 

Wrongful Disability, Different Number Cases

But are all wrongful disability cases same number cases, so that principle N can be applied to them?  A possible different number wrongful disability case occurs if the parents would be unable to have a nondisabled child instead; for example, the parents are virtually certain to genetically transmit the disability to any child they conceive.  If they choose not to have a child with a disability and can have no other child instead, the result is one fewer children--a different number case.  But if having the disabled child is the only way the parents can satisfy their important reproductive interest in having children, and if that child will have a worthwhile, though disabled, life, they do no wrong in having the child; it is not a case of wrongful disability.

          Different number cases of wrongful disability might also arise where the parents could only have substituted two or more normal children for the disabled child.  It is difficult to imagine how such cases would arise; perhaps if the only way to substitute for the disabled child was to use a form of artificial reproductive technology that typically results in multiple births by parents deeply opposed to abortion.  We believe that if it is only possible to substitute more than one nondisabled child for the disabled child, then all other things being equal that would not make it any less wrong to fail to do so.  But we acknowledge having no comprehensive solution to the application of principles of beneficence and nonmaleficence to different number cases.

 

The Nondirectiveness Norm in Genetic Counseling

          The practice of genetic counseling is typically guided by a strong norm of nondirectiveness. The counselor's role is only to provide the counselee with information about the harmful genetic condition the counselee's child may or will have. The counselor enables the counselee to make an informed reproductive choice, but should not, according to this norm, seek to influence that choice. The counselee's values, not the counselor's, should guide the choice. One important rationale for this norm has been to keep genetic counselors out of the morally and politically contentious issue of abortion. (The norm of nondirectiveness may also be a protective strategy to disassociate genetic counseling from the taint of eugenics).

          Our analysis shows that in cases of both wrongful life and wrongful disability the nondirectiveness norm is morally problematic. Although reasonable disagreement exists about whether some failures to prevent harmful genetically-transmitted conditions would be morally wrong, in other cases such failures would be as clearly and uncontroversially wrong as cases of child abuse and neglect whose wrongness is not seriously questioned. Just as nondirectiveness about those cases of child abuse and neglect would be indefensible, so too is nondirectiveness about genetic transmission of comparable harmful conditions. The norm of nondirectiveness in genetic counseling may function as a useful reminder of reasonable disagreement about whether prevention of a particular harmful condition is morally required, but it is indefensible as an inflexible and systematic norm to guide all genetic counseling.  

 

V.  Conclusion

The issues of reproductive freedom and the obligation to prevent genetically transmitted harmful conditions explored in this chapter are in some respects familiar because they are similar to issues that arise outside the genetic context.  The account we developed of the different content or components of reproductive freedom, together with the distinct moral grounds of reproductive freedom, obviously applies outside the context of the prevention of genetically transmitted harmful conditions.  We developed our account of reproductive freedom in some detail for two reasons. First, one of the worst wrongs of the old eugenics was its disregard for reproductive freedom; to avoid making the same mistake it is necessary to have a clear understanding of and appreciation for reproductive freedom. Second, when there is moral conflict about the prevention of genetically transmitted harmful conditions, it is reproductive freedom that typically must be put in the balance in order to determine whether preventing those harmful conditions is morally required.

          Of course, as we noted much earlier, in the great majority of cases there will be no conflict between reproductive freedom and the prevention of genetically transmitted harmful conditions because most prospective parents will voluntarily, even eagerly, avail themselves of genetic information and interventions that will prevent harmful conditions for their children.  The presumption that prospective parents will act in the best interests of their children is well founded, but it does not hold true in every case, either because some prospective parents evidence little concern for their children's well-being or because there are genuine and unavoidable conflicts of interest between parents and their children.

          We distinguished several different kinds of cases in which moral issues about the prevention of genetically transmitted harmful conditions can arise, and focused our closest attention on the philosophical and moral complexities at the heart of the failures to prevent harmful conditions that we called wrongful life and wrongful disability.  Neither wrongful life nor wrongful disability are unique to the genetic context, but the genetic context will soon contain, if it does not already, their most common and important instances.

          We have tried to show how relatively familiar principles of harm prevention can be interpreted and extended so as to apply in these new and often perplexing cases.  But it has not always been possible simply to apply familiar ethical principles to these new problems and contexts.  We have found here, as elsewhere in this volume, that ethical problems raised by the new genetic knowledge, together with the new interventions that knowledge will likely make possible, uncover and illuminate some important limits of contemporary ethical theories and help point the way toward extending and enriching them.

          This chapter has focused on the circumstances in which parents are morally required to undertake genetic interventions to prevent harmful conditions in their offspring. But the moral principles we have appealed to also assert a responsibility to secure benefits for offspring. The next chapter explores the limits of what it is permissible for them to do in order to improve their children's lives through genetic interventions.


Endnotes



1.