One of the major defenders of the centrality of autonomy in bioethics, the British medical ethicist and pediatrician, Raanan Gillon argues that respect for autonomy should hold a primary place among the four principles of biomedical ethics[3]. Other proponents of autonomy, Beauchamp and Childress, define autonomy as a form of personal liberty of action where the individual determines his or her own course of action in accordance with a plan chosen by himself or herself[1]. In application to clinical medicine, respect for autonomy dictates that patients with decision-making ability have a right to voice their medical treatment preferences, and physicians have the concomitant duty to respect those preferences[4]. Like Beauchamp and Childress, Gillon embraces a Millian understanding of autonomy, understanding it as deliberated self rule; the ability and tendency to think for oneself, to make decisions for oneself about the way one wishes to lead one's life based on that thinking, and then to enact those decisions--is what makes morality--any sort of morality--possible[3]. Given its supreme ethical importance, autonomy is not merely a value to be respected, but a virtue or trait that ought to be actively developed, nurtured and promoted.
According to Gillon, other ethical principles (beneficence, non-maleficence, and justice) presuppose (and can be reduced to) respect for autonomy. Beneficence and non-maleficence toward autonomous moral agents presuppose respect for the autonomy of these agents even when they choose to refuse medical interventions which are life-saving. Gillon also takes an autonomy-centered approach to justice, arguing that responding to people's needs justly will require respect for those people's autonomous views, including autonomous rejection of offers to meet their needs; and, more importantly, because providing for people's needs requires resources, including other people's resources[3]. To conclude his praise for autonomy, Gillon writes that respect for autonomy contingently builds in a prima facie moral requirement to respect both individual and cultural moral variability[3]. While it is true that not all autonomy-based approaches in bioethics take the explicit and extreme form expressed by Gillon, autonomy continues to be treated implicitly as a primary value in many controversial clinical and research debates, from end of life issues (such as the Terri Shiavo case) to questions of exploitation of research subjects in international health research. When ethical principles conflict, it is often thought that the conflict can be resolved in an ideally impartial way by asking, for example, what the patient wants (or would have wanted) or whether the research subject really understood and freely consented to the procedures described in the research protocol. In this way, the multifarious values involved in the practice of medicine and biomedical research tend to be reduced to the principle of respect for persons, itself narrowly understood as respect for autonomy. Furthermore, the preeminence of autonomy as an ethical value within bioethics is deeply related to the increasing commoditization of medicine in developed countries. For the more that medical practices are justified by reference to patient choice, the more that patients will be viewed as 'clients' and health care professionals perceived as 'service providers'. This model of patient as 'client', which is prevalent in the United States of America and some parts of the western world, assumes affluence and power: the (literate) patient has to be capable of understanding and rationally weighing his/her options--possibly even in disagreement with the physician--and be in a position to pay in exchange for services chosen.
Autonomy, exaggeration of human agency, and ethical pluralism
An autonomy-based ethics places the responsibility for medical decision-making largely in the hands of the patient. This raises the descriptive question of whether this conception accurately depicts how clinical decisions are actually made, as well as the normative question about whether such a conception of responsibility should (or should not) function as a universal ideal. In regard to the descriptive issue, patients in resource-poor settings are often not concerned with their ability to determine and shape the course of cure. Their arrival at the local health center is the outcome of a long family discussion that led to the collection of money. Sometimes, the patient arrives at the dispensary when the disease has reached its critical stage because the cost of care is too high. The primary expectation of both patient and family is to get the medicine or undergo a medical procedure they need and go back to their workplace. Spending time at the hospital means loss of earnings for them and their families or the diminishment of financial resources. When people can barely afford the cost of care or satisfy the nutritional requirements for a good recovery, the ethics of medical encounter should be understood differently and expressed in different terms than patient choice. Instead of developing a highly-organized medical bureaucracy that cares for the enforcement of patients' rights and protects medical professionals from accusations of malpractice, it would be more helpful to develop new sets of values that guide medical practice and promote patient participation in the healing relationship. The framing of these values may encourage and foster a non-confrontational relationship between health professionals and patients in the clinical setting, and include social challenges that influence health in the bioethics agenda. The role of bioethics will then consist in identifying social values and laws that may guide clinical work, restore the social dimension of medicine, connect the macro-determinants of health to medical practice and health system delivery, avoid the fragmentation of healthcare, and advocate for good health policies.
The challenge facing bioethics in resource-poor settings is not then to mislead people with unrealistic promises of autonomy that very few people can indeed achieve, but to articulate moral principles and societal values that are oriented around the promotion of equitable access to care and which broaden the goals of medicine and public health. The goals of medicine cannot be confined to the alleviation of suffering within the clinical setting. Medicine needs to be concerned with the determinants of good and bad health outside the clinical context in order to contribute to evidence-based clinical and public health interventions and education. The major bioethical questions prevalent in resource-poor countries do not essentially revolve around the provision of informed consent at the individual level, but rather around the burning social questions of access to care, commodification and quality of medical care, the relationship between income disparities and health inequities, the impact of poverty and underdevelopment on population health, priorities in biomedical research, and impacts of gender discrimination on women's health[5, 6]. Once the focus is shifted away from the individualistic 'patient as client' paradigm, the social problems connected with the domination of medicine by market forces become apparent. If the goal of medicine is to restore health functioning, bioethics should avoid adopting a conception of autonomy that can be used to justify the domination of healthcare delivery by market forces alone and (wittingly or unwittingly) legitimizing health care systems that exclude the needy sick because the latter are unable to pay (or co-pay) for services or afford hefty medical insurance premiums. Even those bioethicists who promote market-driven medicine based on a libertarian anthropology[7, 8] ought to carefully articulate alternative ethical values for health care and biomedical research, if they not to be lured into a 'self-defeating' conception of medicine. As an example of the latter tendency, Robert Sade considers medicine as a market commodity and understands medical practice as sets of skills that physicians are entitled to sell on the marketplace to make as much money as possible. Even the cries of the destitute sick or government regulatory function cannot restrict the physicians' appetite for greater financial reward. Sade's anthropology and approach to medicine is based on the assumption that individuals have the right to select the values that they deem necessary to sustain one's own life. They are also entitled to exercise their judgment to take the best course of action to achieve chosen values. Finally, they have the right to dispose of those values, once gained, in any way one chooses, without coercion by other men[7]. Similarly, Tristram Engelhardt protects human freedom to the point of ignoring the fact that the concern that we have for each other makes life in society possible. For him, as long as freedom functions as a side constraint, and as long as the moral community is based on respect for freedom and not force, individual persons will have the possibility of holding entitlements[8], Engelhardt's suggestion is paradoxical because, in trying to protect freedom of individuals to use their resources to access health care and other goods, he does not ensure that those with few resources have the freedom to obtain health care. Realistically, a genuine affirmation of autonomy cannot result in action informed or motivated by the desire to avoid being a responsible member of one's moral community[9]. Here, responsibility means that one should not exploit others by using autonomy as a warrant to market-driven medicine or profit-seeking attitudes. Once medicine is understood as a commoditized product like any other, those who cannot afford services are merely unfortunate consumers. In this way, a strong emphasis on autonomy can contribute to a culture in which healing and health promotion are no longer at the center of clinical practice and biomedical research.
One can hardly refute the fact that complex social and economic forces have placed patient autonomy at the center of medical ethics, and thereby undermined the age-old ethic of physician beneficence[10]. This change is sustained by waning trust in the traditional patient-physician relationship. With the control of medicine by the forces of the market, patients have become consumers of a market commodity called medical care. As a result of this change, the clinical relationship between the patient and physician begins to be seen as a contract and not as a covenant of care as it was in the past. Autonomy-based bioethics has a tendency to distort the relationship between individuals and the world. On the one hand, it exaggerates the power and range of individual agency; furthermore, it underestimates the impact of society, culture and environment, both on individual decision-making and on health. If persons are regarded as atomistic, certain defensive notions of individualistic rights-based autonomy prevail. If a relational construction of personal identity is employed instead, then respect for autonomy becomes part of a wider morality of relationship and care[1]. 'Atomistic autonomy' is divisive and lacks social rootedness while relational autonomy brings about trust and communality. The second version of autonomy, which reveals our true self in society, presents the possibility of placing trust and partnership at the center of the patient-physician relationship. With such an understanding of personhood, bioethics can better balance its concerns over choices and actions with those of relationship and responsibility. A more plausible philosophical anthropology would conceive individuals as entangled in the world, both capable of acting on it and subject to being affected by it.
Reflection on the notion of disease, both infectious and chronic, can contribute to a more plausible philosophical anthropology for bioethics. Infectious diseases question our understanding of autonomous agency in two important ways. First, as both a victim and a vector, a patient cannot be simply seen as a rational agent who has the final ethical word on his own decisions. Both vulnerability to infection and threat of transmission to others should shape our understanding of patient agency. Second, the concept of choice that shapes our conception of agency in bioethics can no longer be understood in isolation from society. Risk of acquiring and transmitting infectious diseases reflects the patient's interconnectedness with others and the biological environment, an interconnectedness which is always there even when infectious disease is not present[11]. Although the values and desires of the patient obviously need to be considered, the ideal of the autonomous agent will remain a fiction unless the social context of the patient's vulnerability is also considered. For other reasons, chronic disease also challenges our understanding of autonomy, especially when the patient finds it hard to manage his or her chronic condition. Family or friends stand as important resources for decision-making and long-term daily care for chronic diseases. We should then recognize that the family and community, which may play an important role in patient care, are part of the resource needed by the patient to exercise agency[12]. More and more, it is becoming obvious that the promotion of patients' agency requires serious consideration of patients' best interests in a broader way. Against the backdrop of contemporary institutional medicine, family solidarity is more important than ever to help maintain patient's dignity and agency throughout stressful time[13]. Exclusion of family and relatives from the sphere of decision-making on account of respect for individual autonomy does not necessarily serve patients' best interest. Furthermore, primary care, because of its focus on treatment and prevention of chronic and infectious diseases, is the domain of medicine that goes beyond techno-medical solutions to consider patients as persons with their stories, relationships, and social environment in which they live. Consequently, primary care should essentially rely on socially-grounded values rather than on desocialized principles[14].
Family and social relationships are important in the context of clinical medicine. However, we cannot undermine the importance of individual freedom. We simply reject strong claims that do not have any social rootedness. It would be almost unsound and socially untrue to radically endorse autonomy to the detriment of an ethic of responsibility and socially-based care because they are mutually interdependent, and a complete account of medicine's moral axis requires that they be integrated. This reorientation is crucial for reasserting the ethos of clinical medicine, whose fundamental mandate remains the care of others[10].
Autonomy ethics and the 'moral vacuum'
For Immanuel Kant, respect for persons never refers to the freedom to be left alone. Kant's understanding of respect for autonomy provides the ground for the categorical imperative, which he formulated in five different ways. The third formulation, ".act so that you treat humanity whether in your own person or in that of another, always as an end and never as means only" [15] cannot be reduced to the respect for autonomy often found in the bioethics literature. The view of autonomy commonly found among individuals and in some of the bioethics literature in North America or Western culture is more in tune with John Stuart Mill's formulation of liberty: do not intrude on the freedom of any person by an invasion foreign to his or her own wishes and values. When Kant talks about autonomy, he does not imply that one should act according to one's own desires, unconstrained by a balanced consideration of one's situation as a being-among-others[9] Instead, he refers to the dignity of humans who are capable of making for themselves and others universal law. Hence, autonomy, rightly construed... results in action informed and motivated by the desire to be responsible member of one's moral community (the ground of one's being-among-others)[9]. Kantian autonomy is tied the moral agent's search for the truth and respectable conduct. The autonomous subject does not act in accordance to his or her primary inclination. Kantian autonomy is applied to actions performed when the will is freed from any selfish determination. When humans treat each other as ends and never as means merely, there arises a systematic union of rational beings under common objective laws. Physician and patient, each with their own needs, desires, capabilities, must find those principles that allow them to coalesce into a helping alliance to achieve a common goal.
Contemporary readings often accept a Millian version of autonomy that is associated with self-seeking attitudes. This approach to respect for autonomy refers to the capacity to act on needs, wants, or wishes; a capacity shared by many creatures. Since the person's action is informed by instrumental reasoning, it constricts the scope of reason so that it is subject to any desire or disposition that one happens to endorse at the time one acts[9]. Focusing essentially on individual choices sets up a false and pernicious opposition between persons and the community to which they belong. It is reasonable, on both conceptual and empirical grounds, to suppose that individuals acquire their values through engagement with a concrete moral tradition, rather than through a private and self-directed process. Instead of providing ethical decision-making with an objective and rational process, the obsession with individual autonomy tends to create what McCormick calls a 'moral vacuum', i.e. the disappearance of the network of shared and established goods and values that make the choices of individuals right or wrong, moral or immoral[16].
Balancing autonomy and community in ethical decision-making
It is hard to undermine the influence of social, cultural and environmental factors on moral decision making. We have to take these factors into account in order to fully appreciate the moral dilemmas and health challenges in settings and traditions where individualism does not prevail. Writing from their Jewish background, Barth-Rogers and Jotkowitz note that within Jewish tradition, the idea of unlimited human autonomy is not a defining value; Judaism deems the intrinsic human value of each individual's life to take precedence over patient autonomy[12]. Similarly, the Confucian culture from East Asia understands the person not only as a rational, autonomous being but also as a relational and altruistic entity whose self-actualization involves participating in and promoting the welfare of fellow persons[4]. In the same line of thought, African traditions present a view of the human person that is essentially relational; it is within the social network that the individual lives and acts as a free person. The Jewish, Confucian, and African cultures convey an understanding of the human person and society which is different from individualism operative in some cultures.
This is where the shortcomings of Gillon's autonomy-centered conception of bioethics become the most obvious. Gillon does not reject the view that particular cultures should be respected, instead he theorizes that the prima facie nature of autonomy requires that both the individual and cultural moral variability be respected[3]. But this sense of respect for culture does not adequately reflect the social rootedness of the human person. Despite making 'concessions' to culture, Gillon continues to view societal relationships, determinants and influences to be peripheral to human reason and, because of the danger of ethical relativism, something to be transcended by a universal ethic. Hence, the four principles (with autonomy as supreme among them) can account for all our moral worries and being applied straightforwardly to all situations and contexts[17]. Gillon contends that any other moral principle or value can be explained by one or some combination of the four principles. In fact, however, Gillon's quest for a universal discourse is nothing more than the promotion of one approach to ethics among others, one which reflects specific cultural assumptions concerning individual choice and future-oriented action that are associated with class position and social opportunities and foreign to the lived reality of the poor, the marginalized, and people of color in a multicultural society like the United States[18]. Any attempt to universalize an ethnic particularity fails the test of respect for pluralism in bioethics and in our ever-globalizing world.
In resource-poor countries where medical paternalism prevails on account of patient beneficence and shared-responsibility for health promotion[19], the necessity to create the conditions that improve, for example, patient-physician communication in ways that favor patient agency needs to be acknowledged. Very often, the physician does not even tell the patient what is going on with his or her health. However, the one-sided view of the human person which prevails in autonomy-based bioethics should not be adopted as a model to correct paternalism; a more fruitful alternative would be a combination between a community- and tradition-oriented view and autonomy that conceives decision-making as guided by important human values such as partnership, trust and solidarity, in addition to autonomy. This view would acknowledge the embedded and relational nature of human choices, behavior, ways of expressing emotions and feelings, patterns of thinking, and conceptions of disease and healing.