oxford handbook of bioethics

c h a p t e r 3

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INT RO DUC T I ON

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NO single concept has been more important in the contemporary development of bioethics, and the revival of medical ethics, than the concept of autonomy, and none better reflects both the philosophical and the political currents shaping the field. In this chapter I propose to consider autonomy in three of its facets and functions: first, as a concept in ethical theory; second, as a concept in applied ethics; and finally, as what might be called an ideological concept — that is, one that both draws from and reinforces non-philosophical interests at work in the profession of medicine, biomedical science and technology, and the broader liberal individualistic culture of Anglophone countries, particularly the United States, where a bioethical discourse centred on autonomy has flourished.

Two theses stand behind this discussion. First, there is a significant difference between the meaning and history of the concept of autonomy in moral philosophy (and political theory) and its appropriation in the normative and applied work of bioethics. This difference is often overlooked, and the deployment of autonomy in bioethics has usually been presented as the straightforward ‘application’ of a philosophically grounded concept and principle to particular cases or decisionmaking situations. In fact, the relationship between the meaning of autonomy in bioethics and its status in deontological or rights-based theory — particularly its most natural homes, contractarian and libertarian liberalism — is highly selective and tenuous. This is best illustrated, I believe, by contrasting autonomy as Kant

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understood it with liberty as it has been understood by John Stuart Mill and more recently Isaiah Berlin. Indeed, to talk about ‘autonomy’ in bioethics is something of a misnomer and a category mistake; the concept that is actually much more influential in bioethics is a version of Millian ‘liberty’, the version that Berlin dubbed ‘negative liberty’. Bioethicists by and large have been suspicious of ‘positive liberty’, as Berlin himself was, and which is closely akin to Kantian or rationalistic autonomy. Modern bioethics has largely rejected the theoretical tradition and legacy of autonomy not so much by explicit critique as by rendering it invisible. This is done when the term ‘autonomy’ is used to mean and to do the ethical work of negative liberty.

My second thesis is that this conceptual displacement has occurred in bioethics partly owing to the sociology of the field and partly owing to the conditions that have been required of it to gain intellectual legitimacy (and thereby some measure of power and influence) in professional and policy domains.

AUTONOMY’S INflUENCE I N BIOETHICS

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I

Beginning with the Belmont Report of the National Commission on Ethical Issues in Human Subject Research (or perhaps even earlier, with Telford Taylor’s resounding statement at the Nuremberg Doctors’ Trial), the concept of autonomy (sometimes referred to as ‘self-determination’ or ‘respect for persons’) has played a central role in the modern field of bioethics. This centrality was reinforced by the tremendous influence of the seminal work of Tom Beauchamp and James Childress The Principles of Biomedical Ethics, first published in 1979, which has since become the standard work in the field and has gone through four significant revisions and expansions. There the principle of autonomy is presented as a middle-range principle, not dependent upon any single more general or abstract ethical theory and compatible with many. It stands alongside the other principles in the Beauchamp and Childress edifice — beneficence, non-maleficence, and justice — as a primus inter pares.

In soon-to-follow agenda-setting documents for the field, such as the influential reports of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in the early 1980s, the principle of selfdetermination again took a leading role in the analysis and recommendations made about everything from whistle blowing to genetic testing to health care access to decisions to forgo life-sustaining treatment. Before long autonomy-centred work in bioethics was beginning to appear in other countries beside the United States, in the Canadian Law Reform Commission, in the Waller Commission in Australia, in the work of the noted Australian philosopher Max Charlesworth (1993), and in the United Kingdom with the work of Raanan Gillon (1986), to name only a few.

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This is not the proper place to rehearse all the countless ways and occasions in which the concept of autonomy has been pressed into service in bioethics. By the late 1960s and early 1970s it was an idea whose time had come. Let four areas of debate in bioethics provide brief examples to indicate the power of autonomy (or, more precisely, various conceptions of autonomy, for there are several) in bioethics. These are abortion, medically assisted reproduction, genetic counselling, and decisions to forgo life-sustaining medical treatment.

II

One thinks first of the evolution of the abortion debate during these years, particularly polarizing in the United States, and culminating in the landmark decision of the US Supreme Court Roe v. Wade, in which the woman’s autonomous control of her own body and her own pregnancy became the central tenet. Autonomy was clearly central for those who did not ascribe moral significance to the early embryo and fetus. But even more interesting and indicative of the moral force of the concept of autonomy was an argument put forward by Judith Jarvis Thomson (1971), who was willing to grant even personhood status to the fetus and yet still argued that the pregnant woman’s autonomy overrode any moral claims of fetal persons. As the pro-choice or pro-abortion line of argument developed, the question of the morally right choice came to be subsumed under the question of who had the moral right to choose. Some, like Daniel Callahan (1970), would argue that the law should not interfere with a woman’s autonomy by prohibiting abortion, but that from a moral point of view there should be good reasons, some account beyond appeal to the woman’s subjective will alone, for terminating a pregnancy; good reasons, that is, for cashing in one’s autonomy.

In general, I think it is fair to say that Thomson’s position prevailed over Callahan’s position, but in so far as they both appealed to moral reasons (other than the autonomous right to choose) to justify a particular choice, neither of these positions gave the concept of autonomy the strength that it acquired in the more popular, less philosophical debate. The abortion controversy became so polarized and so bitter that asking for moral reasons for autonomous choice or action was rejected by the pro-choice side of the debate as a covert means of taking autonomy and power away from women. Being autonomous came to mean not being second-guessed by anybody or anything about one’s choices or the use that one makes of one’s freedom.

Closely related was the larger issue of medically assisted reproduction and reproductive autonomy. New technologies and drugs to overcome infertility, such as in vitro fertilization (IVf ) grew in efficacy and popularity in the 1980s. Autonomous control of one’s gametes — for donation, stimulation, implantation, and cryo-preservation — was the dominant orientation of bioethics, as various

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early restrictions were set aside that would make IVF and related technology accessible only to married heterosexual couples, or only to those couples who could demonstrate good health and good character and potential to be good parents and to provide well for the child. Concerns about the unknown effects on the child, psychological effects, social stigma, even possible genetic damage caused by the procedure itself were all set aside as so much idle speculation, and, in any case, were not considered sufficiently weighty to override the moral importance of protecting autonomy and choice for infertile men and women (Robertson 1994).

In the new field of genetic counselling, dealing as it did with a sordid history of racism, discrimination, and eugenics, the concept of respecting autonomy was the foundation upon which the doctrine of non-directive counselling was built. That same orientation and issue quickly moved over into the field of reproductive counselling as well.

The ideal of ‘non-directive’ behaviour by the counsellor raises a number of interesting problems in relation to the concept of autonomy. In essence, this doctrine limits the counsellor’s role to providing clear, understandable factual information about test results, treatment options, and the like. Counselling should never discuss which course of action may be more reasonable, wise, prudent, or ethically appropriate. Even non-binding advice on such matters is regarded, not as helpful additional information, but rather as intrusive, even coercive, influence by a professional authority figure. As such it interferes with, instead of assisting or promoting, the client’s exercise of autonomy. This makes sense when autonomy is conceived as being the independent exercise of individual will or choice, but it seems odd and overly restrictive if autonomy requires some degree of reason and is subject to some norms of cogency and correctness (perhaps norms built into the very concept of reason itself ).

Here many of the difficult issues related to the concept of autonomy become apparent. If we stress the notion of reason and rational choice, how tightly do the norms of reason constrain action? Is there one right and reasonable decision to be made in each situation, and are only those who embrace the ‘right’ choice truly autonomous? On the other hand, if we stress the notion of liberty and independent choice, does the value of autonomy then preclude all other ethical judgements concerning actions (including perhaps the agent’s own reflexive judgements)? Does it set up an internal conceptual conflict between autonomy and all other ethical values? Kant, for example, held that to be autonomous was to be rational in the sense of adopting principles that met certain conceptual tests, such as universality. John Stuart Mill held that diversity and experiments in ways of life were important and that what is the right way to live for one person may not be the right way for another. Finally, a century later Isaiah Berlin developed this side of Mill’s thought even further and eloquently articulated a defence of liberty and ethical pluralism that was quite far removed from Kant. Often, in bioethics, as is illustrated by the

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the fundamental importance, in the ethical life, of the social fabric of mutual and institutional trust.

AUTONOMY: A COMPLEX CONCEP T

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I

Let us turn now to matters of definition and the place of autonomy in ethical theory outside bioethics.

The word ‘autonomy’ comes from the Greek autos (meaning ‘self ’) and nomos (meaning ‘rule’, ‘governance’, or ‘law’). Literally, therefore, ‘autonomy’ means ‘the state of being self-governed or self-sovereign’; living autonomously means living by a law that you impose on yourself. In other words, autonomy is the right to live your own life in your own way.

Beauchamp and Childress (1994: 121) state that autonomy is the ‘personal rule of the self that is free from both controlling interference by others and from personal limitations that prevent meaningful choice. . . . The autonomous individual freely acts in accordance with a self-chosen plan.’ Numerous social and political philosophers express the same general idea. ‘To regard himself as autonomous’, says Thomas Scanlon (1972: 215), ‘a person must see himself as sovereign in deciding what to believe and in weighing competing reasons for action.’ For his part, Robert Paul Wolff (1970: 14) places autonomy in the context of a struggle among human wills for control:

As Kant argued, moral autonomy is a submission to laws that one has made for oneself. The autonomous man, insofar as he is autonomous, is not subject to the will of another. The autonomous . . . man may do what another tells him, but not because he has been told to do it . . . . By accepting as final the commands of the others, he forfeits his autonomy.

Other philosophers and psychologists, such as R. S. Peters and Lawrence Kohlberg, say that autonomy requires a deliberate self-consciousness about obedience to rules. They place it at the pinnacle of moral development. ‘Children finally pass to the level of autonomy’, Peters writes (1972: 130), ‘when they appreciate that rules are alterable, that they can be criticized and should be accepted or rejected on a basis of reciprocity and fairness. The emergence of rational reflection about rules . . . central to the Kantian conception of autonomy, is the main feature of the final level of moral development.’ Kohlberg (1981) also pictures the best moral agent as standing judgementally above the existing rules, laws, traditions, habits, and norms of his society, and choosing with rational detachment which rules to follow and which to disregard. Autonomy is a catalyst for moral growth and social enlightenment. It is a sign of moral adulthood in the individual; only autonomous persons are truly grown-up, regardless of their age. Kant (1963) likewise saw autonomy as a sign of the enlightenment and maturity of mankind.

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should trace this is debatable ( Tocqueville?), but the groundwork for modern work on autonomy in American sociology was already established in the influential work of David Riesman et al., The Lonely Crowd (1950).1 A generation later, an implied critique of autonomy can be found in what the historian Christopher Lasch (1978) called the ‘culture of narcissism’. It has affinities as well with what the philosopher Charles Taylor (1991) has referred to as the ‘ethics of authenticity’. Robert Bellah and his colleagues (1985) called it ‘expressive individualism’. Finally, at the heart of what I am concerned with under the heading of autonomy is a notion that the sociologist Alan Wolfe (2001) has called ‘moral freedom’. He defines his subject in the following way:

The old adage that America is a free country has, at last, come true, for Americans have come to accept the relevance of individual freedom, not only in their economic and political life, but in their moral life as well. The defining characteristic of the moral philosophy of the Americans can therefore be described as the principle of moral freedom. Moral freedom means that individuals should determine for themselves what it means to lead a good and virtuous life. Contemporary Americans find answers to the perennial questions asked by theologians and moral philosophers, not by conforming to strictures handed down by God or nature, but by considering who they are, what others require, and what consequences follow from acting one way rather than another. Some of our respondents adopt moral freedom as a creative challenge . . . they find themselves quite comfortable with the idea that a good society is one that allows each individual maximum scope for making his or her own moral choices. (2001: 195)

Wolfe goes on to argue that the widespread (but by no means universal) embrace of moral freedom amounts to a cultural revolution in America:

never have so many people been so free of moral constraint as contemporary Americans. Most people, throughout most of the world, have lived under conditions in which their morality was defined for them. Now, for the first time in human history, significant numbers of individuals believe that people should play a role in defining their own morality as they contemplate their proper relationship to God, to one another, and to themselves. (2001: 199)

Many social commentators have been critical of the autonomy orientation of contemporary culture. These writers usually direct their criticism of the culture of autonomy along one of two lines. One such line, developed by the theologian Stanley Hauerwas (1974), is that autonomy is morally flabby because it is little more than an ethic of selfishness and self-indulgence. In a similar expression of the same kind of criticism the sociologist Daniel Bell (1976) decried what he called the dominant ‘hedonism’ behind the cultural transformations begun in the late 1960s.

The second line of criticism of the general cultural emphasis on individual autonomy is that the widespread deference accorded to autonomy today in the

1 Riesman employs the term ‘autonomous self ’ to designate an alternative character type that avoids the respective weaknesses of the ‘inner-directed’ and the ‘other-directed’ personalities. A useful sampling of social commentary on individualism and what we today would probably refer to as autonomy can be found in Bellah et al. (1987).

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law and in secular morality threatens to undermine the moral order itself. A spate of books published in the last few years has developed variations on this theme, including Robert Hughes (1993) and Jean Bethke Elshtain (1995).

These books have in common a sense of disorder, albeit a disorder still just short of normlessness or anomie. Claims to rights and demands for dignity and respect, no matter how well deserved, are overloading the system. This sense of disorder and the need to respond aggressively to it are captured in the very titles or subtitles of many of these works: the ‘fraying of America’ (Hughes’s subtitle), ‘on trial’, ‘defence’, ‘death’, and ‘suffocating America’. In other works, America is being ‘de-moralized’ (Himmelfarb 1995) or ‘disunited’ (Schlesinger 1992).

II

Many of these recent criticisms of the effects of the concept of autonomy in our moral discourse and in our social lives cast an overly broad net. Rather than subjecting autonomy to a more careful conceptual analysis, they tend to use the term (or the concept) as a lightning rod for many different social complaints and criticisms.

To be sure, autonomy has been very influential in the broader moral culture as it has been in the field of bioethics. What is most needed now, however, is not a broad-brush critique but a more careful sifting of meanings and inconsistencies in the way the term is used. I have already mentioned the distinction between autonomy understood as the exercise of reason and autonomy understood as the exercise of liberty, and I will return to that distinction below. First, though, let us consider the broad and general meaning of autonomy further.

Autonomy is not an ethic of selfishness, nor is self-indulgence the same as rational self-fulfilment. Autonomy means freedom from outside restraint and the freedom to live one’s own life in one’s own way. To be autonomous is to live by your own law, or only by laws that you have embraced and accepted as your own. It is to be self-sovereign. It is to be the author of your life, your self, and your actions. Nothing in these notions necessitates selfishness or egoism. Self-determining conduct need not be exclusively self-serving. Being the author of your own life says nothing per se about the moral content of that life.

As an ethic, autonomy means living according to your own values and principles, as these are refined in the light of informed, rational deliberation and settled conviction. This ethic is a far cry from an anything-goes, do-your-own-thing morality. There is no obvious reason why an autonomous person cannot identify with principles of justice and moral virtue that are founded on reason. Not only is autonomy compatible with just and altruistic ideals, it seems to go naturally with them. The free and secure person is a more open and charitable person. It is insecurity about one’s worth that often breeds defensiveness and hostility.

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While autonomy is not an ideal of selfishness or disorderly self-indulgence, it is individualistic. It can be — according to most philosophers it has to be — based on rational will rather than licence; but it is the self ’s reason, not that of a community or a higher authority. Autonomy’s mood is always possessive. It speaks in the first-person singular rather than the first-person plural. It is a vision of free Is, not free Wes.

In order to illuminate the special role of autonomy in modern culture, Joel Feinberg (1980), a leading proponent of autonomy and civil liberties, has asked what would be missing if we lived in a society that did not understand the concepts of autonomy and rights. He imagined a prosperous and benevolent society, not a tyranny or a despotism. He imagined a society in which individuals possessed all the other virtues and lived by the Ten Commandments and the Golden Rule. Even in such a good and happy society, Feinberg said, something essential to morality and humanity would be lacking. Individuals would not be able to make claims on each other for dignity and respect.

Autonomy allows one person to demand respect from another as a matter of right. Not to ask meekly for respect as a matter of goodwill, friendship, or charity, but to demand it. Proudly. And not necessarily on the basis of some accomplishment, but just because one is a person, an adult human being, a first-class member of the moral community. It is through the concepts of autonomy and rights that we gain our sense of identity as moral persons and free agents worthy of the respect of others.

Self-sovereignty in the moral realm; the right to live your own life in your own way so long as you do others no harm; being true to yourself above all — these notions are at the core of individualism, authenticity, moral freedom, and autonomy, if not as all professional philosophers would define them, then at least as many ordinary people define them in their own social and self-consciousness.

III

In sum, there are several key tenets that give autonomy its extraordinary moral power and appeal. They can be stated as follows. One tenet is moral individualism, the belief that the human individual is the centre of the moral universe, the subject of ultimate worth to whose well-being all other things that may be said to have moral value must finally contribute. Another is what might be called moral constructivism, the notion that the basic features of society are ultimately products of human choice and artifice, and as such the social world is a human world, a world fashioned not by God or nature but by the amazingly plastic, adaptive human will.

The final root idea underlying autonomy is the doctrine of moral voluntarism or consent. The moral life of the individual is made up of relationships, commitments, and obligations that the individual has freely chosen, not those into which she was