The principal goal of the Human Genome Project and other genetic research is to increase our capacity to prevent or treat human disease. We now devote substantial resources to research furthering the understanding of the genetic basis of various serious disabling congenital conditions. When genes are identified for such conditions, tests can usually be developed that will enable prospective parents to determine their risk of passing on the conditions to their children, or that will determine the presence of the condition in a fetus. Health insurance often supports the costs of this testing. In the future, such testing of a fetus may allow genetic or other in utero interventions to prevent the development of the disabling condition, but there is typically a considerable time lag between the development of genetic tests for a congenital condition and therapeutic interventions to prevent or treat the condition. When individuals pursue such testing now, either before or after conception, they typically do so with the intent of avoiding the birth of a child with the condition that is being tested for. This can be done before conception by employing sperm and/or egg donation in order to eliminate the genetic material of the person carrying the genes for the condition; by using in vitro fertilization and preimplantation embryo testing; or by avoiding conception altogether. It can be done after conception by aborting an affected fetus and trying again to achieve a normal pregnancy.

This appendix aims to address issues about the methodology of moral reasoning used in this volume. Because many, perhaps most readers will not be especially concerned about such issues, we have chosen to address them here, rather than impeding the flow of analysis in the text.

As much as at any time in the recent past, there is considerable controversy about the proper methodology for ethical analysis, especially in bioethics (Jonson and Toulmin 1988; Gillen and Lloyd 1994; Clouser 1994; Clouser in Gert 1996). Our purpose here is not to resolve these complex issues, only to make it clear that our choice of methodology is reflective (rather than reflexive), and to deflect what we take to be certain spurious but unfortunately predictable objections to our methodology. We are under no illusion that what we say here will render our work immune from methodological criticisms. We hope, rather, at least to clear the field of spurious criticisms to make room for serious ones.

THE METHOD OF REFLECTIVE EQUILIBRIUM

The Charge of Parochialism

In Chapter 1, we noted that we use a familiar method for moral inquiry, that of wide reflective equilibrium. That method is easily criticized – if represented in caricature form. In the end, the best defense of this method is to put it into action, as we have done, and let it be judged by its results.

OLD DISTINCTIONS IN NEW CLOTHES

Positive and Negative Eugenic Goals for Populations

Earlier in this century, the eugenics movement was more concerned with the genetic quality, or “health,” of populations than with the health and welfare of individuals. Indeed, as noted in Chapter 2, some in that movement were concerned that keeping “unfit” individuals healthy might have dysgenic effects. This focus on populations rather than individuals is part of what makes the movement and its goals seem so threatening.

We also saw that the eugenics movement had two main goals. Its negative goal was the reduction in dysgenic effects or burdens on the gene pool by eliminating genetic diseases, disorders, disabilities, and other “defects.” Negative eugenics aimed to improve the health and performance of the population by preventing reproduction of its least healthy and least capable members. This goal required severe restrictions on reproductive rights, for those with “defects” had to be kept from reproducing, if necessary through the involuntary sterilization of “mental defectives.”

The goal of positive eugenics was to improve the health and performance of the population by increasing the rate of reproduction of those harboring its best traits and capabilities. Pursuing this goal also involved modifying traditional reproductive practices, although usually through voluntary measures. For example, as also noted in Chapter 2, to inspire the right marriage choices, there were competitions at county fairs aimed at displaying the best human “breeding stock.”

Newly informed of the origin of species and the mechanisms of evolutionary adaptation, Galton and the original eugenicists sought to apply their knowledge for the salvation and improvement of society. But the road was bumpy, their vision fogged, and the route unclear; before long, there were victims, and eventually, in the cataclysm of the Nazi years, the entire enterprise crashed. Today, it is standard practice to repudiate not only their beliefs, their biases, and their methods, but also their values and aims.

For two generations, it has been taboo to discuss the application of genetic knowledge to the design, management, and improvement of society. In light of our greater sophistication about heredity, this kind of thinking seemed pointless; and given the experience of many people with eugenics, it also seemed very dangerous. Genetic scientists and clinicians alike instituted a new orthodoxy, a practice that focused narrowly on the medical and on the individual. Their role was to be confined to providing information (and later, therapy) according to the wishes of the individual patient or client and without any thought of the impact of a particular intervention on society at large, whether for good or ill.

The social perspective on genetics, however, will inevitably be revisited as the revolution in genetic science and medicine progresses. As genetics permeates our lives, as more and more people come into contact with genetic screening, testing, and, eventually, intervention, we cannot fail to appreciate the fact that these individual encounters have effects on others.

THE RELEVANCE OF EUGENICS

Optimism and Anxiety

The revolution in genetics, although full of promise for understanding our own constitution and for the power to change human lives for the better, has nevertheless proven profoundly unsettling. Discovery of the genes responsible for certain diseases and traits, and invention of new techniques for manipulating the human genome provoke not only wonder but fear as well. Sensitive to these concerns, James Watson, first director of the Human Genome Project, found it prudent to promise a wary Congress that a significant share of funds allocated to the project would be devoted to studies of the ethical, legal, and social issues it raises. His successor, Francis Collins, has stated that concern over ethical issues, not the remaining scientific and technological hurdles, were the greatest threat to the success of the project, for the project cannot continue without public support.

The source of most of the public's distrust, no doubt, stems from the widespread realization that genetic information may be used to deny insurance and employment. It takes no subtle philosophy to understand that anyone is vulnerable to exclusion from these and other economic and social arrangements should their genes be examined and found wanting. These risks have rightly occupied center stage in bioethical debates over how the new genetics will be used.

Some of this concern, however, may be a faint echo of earlier controversy. The current revolution in molecular biology is not the first but the second large-scale attempt to modify the pattern of human heredity for the better.

CHALLENGES OF THE GENETIC AGE

A powerful alliance of government, business, and science is propelling society into a new era in which human beings will possess a much greater understanding of the most basic functions of all forms of life. With this understanding will come unprecedented control over living things, including ourselves. Scientific knowledge of how genes work will empower human beings to cure and prevent diseases. It may also let us shape some of the most important biological characteristics of the human beings we choose to bring into existence.

No one knows the limits of our future powers to shape human lives – or when these limits will be reached. Some expect that at most we will be able to reduce the incidence of serious genetic diseases and perhaps ensure that more people are at the higher end of the distribution of normal traits. More people may have long and healthy lives, and perhaps some will have better memory and other intellectual powers. Others foresee not only greater numbers of people functioning at high levels, but the attainment of levels previously unheard of: lives measured in centuries, people of superhuman intelligence, humans endowed with new traits presently undreamt of. One thing, however, is certain: Whatever the limits of our technical abilities turn out to be, coping with these new powers will tax our wisdom to the utmost.

PREVIEWS OF PERPLEXITIES

Consider a few of the perplexities with which the genetic revolution is likely to confront us in the future.

HAVING THE BEST CHILDREN WE CAN

“Be All You Can Be,” the Army recruiting poster urges young men and women. Many parents share the sentiment. They want their children to be the best they can be. For many parents, their most important project in life is to pursue that goal, and they make sacrifices to see it happen. And why shouldn't parents aim to make their offspring the best they can be?

Of course, means matter. That is why we consider in this chapter whether parents should be free to use genetic intervention techniques to produce the best offspring they can. Posed this way, the question immediately raises many antieugenic hackles: Won't screening and selective abortion mean we eliminate many lives that are worth living? And won't it devalue the lives of people with disabilities? Anyway, who is to say what is the “best” (some parents have peculiar ideas)? Won't the economically and socially privileged be those best placed to pursue the “best”? Doesn't “best” for some mean worse for others? Isn't it wrong for parents to think of their children as something they design?

These objections deserve attention, and we will return to them shortly, but it is important to understand the presumption behind the original question. Shouldn't parents seek the best – even through genetics – for their offspring? Don't we expect them to?

What Could Be More Natural Than Parents Seeking the Best?

Parents are generally regarded as having permission, and some would say an obligation, to produce the “best” children they can.

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 2 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.

OBJECTIVES

The Morality of Inclusion

So far this volume has examined ethical issues concerning how, when, and by whom genetic intervention technologies should be employed. Until now, the tacit assumption has been that the project of using genetic science to improve human lives is not only ethically permissible but laudable. The present chapter articulates, analyzes, and evaluates an arresting critique of this basic assumption that has been advanced by some members of the disabilities rights movement. Addressing the radical disabilities rights challenge will reveal how the prospect of advances in genetic knowledge and genetic intervention pushes the limits of ethical theory by raising profound issues about what we referred to in Chapter 3 as the morality of inclusion.

These two objectives are intimately related. The critique by disabilities rights advocates is a profound challenge to the reassuring assumption that the new genetics avoids the exclusionary features of the eugenics movements that were noted in Chapter 1. The concept of the morality of inclusion provides the key to articulating the various dimensions of exclusion and understanding their moral significance.

At the deepest level, a theory of the morality of inclusion would articulate criteria for membership in what might be called the primary moral community, specifying the characteristics that individuals must have in order to qualify as worthy of equal consideration and respect.

DISTRIBUTIVE JUSTICE ISSUES RAISED BY GENETIC INTERVENTION

The genetic revolution in molecular biology will not benefit all equally, and some may in fact be greatly disadvantaged by particular applications of genetic science. The fairness of the distribution of benefits and burdens is a matter of social justice, and has appropriately received considerable attention in bioethical writing on the Human Genome Project. Many of the distributive issues are near-term and quite tangible. They include:

• Whether it is just to exclude individuals from employment or from health, life, or disability insurance if they are known to have genetic diseases or genetic factors that predispose them to diseases

• Whether it is just for only those who can afford genetic services to have access to them, especially since much of the initial research that led to these services was publicly funded

• Whether the right to health care includes entitlements to genetic enhancements as well as treatment and prevention of diseases

• Whether international distributive justice requires that the fruits of genetic science (in medicine and agriculture in particular) be shared with those in poorer countries that cannot afford to develop the technology, as opposed to leaving the distribution of these benefits to the global market

• Whether the direction of genetic research and development should be shaped by expected market demand, as opposed to having ethical principles determine priorities (e.g., channeling funds to cure devastating diseases that afflict large numbers of people rather than to the enhancement of normal traits for the rich or the discovery of treatments for less serious conditions, such as male baldness) (Murphy and Lappé, 1994)

We began thinking about writing this book in the spring of 1991 because we believed that new genetic knowledge and technology posed challenges not only to traditional social practices but also to ethical theory. We believed, as nearly everyone does, that ethics should provide guidance for social practice. We also believed that our ethical understanding – the reasons, principles, and theory we draw on – itself has developed in response to specific challenges of social life. Consequently, we thought, the new human capabilities genetics creates requires an examination of ethical theory, not just an application of it. What distinguishes this book is the conviction that we must look deeply inward to the core of our field as moral and political philosophers as well as outward from it toward the engagement of social practices with new genetic powers.

Because our goal was to produce a sustained and systematic analysis, we have produced a multiauthored book, not an anthology of separate articles. Although all four authors collaborated on each chapter, there was a division of labor. Allen Buchanan is the primary author of the Introduction, Chapters 3 and 7, and the appendix on moral methodology. Dan Brock is chiefly responsible for Chapter 6 and shares primary responsiblity with Norman Daniels for Chapter 5. In addition, Daniels is the primary author of Chapter 4. Daniel Wikler is the primary author of Chapter 2 and of Chapter 8 (with some input from Buchanan).