In their work on community involvement in genetic research, Sharp and Foster outline potential strategies for representing the views of the larger community, suggesting that this may be an important component of the overall process of seeking and obtaining consent. Community consultation does not override an individual subject’s right to decline or accept participation, and may serve to make individual consent more authentic. When working with international research teams, the role of the anthropologist is not simply to facilitate a particular study through in-depth knowledge of the local community, but rather to tailor the broad objectives of informed consent to fit local needs. Issues of social justice in healthcare across the world— until recently neglected in traditional bioethics debates focused on individual choice and the dilemmas created by new technologies in resource-rich countries—are being addressed by anthropologists, particularly those working in the arena of public health (Levin and Fleischman). Anthropologists working in bioethics are deeply concerned about global health disparities, including class-based inequities in the United States (Levin and Schiller). Farmer (2003) levels a harsh critique against the narrow focus of bioethics, arguing strongly for greater attention to structural inequities that maintain health disparities in many areas of the world. The need for broadening the boundaries of bioethics beyond the confines of Western medicine and its limited attention to the political economy of social suffering is increasingly recognized by anthropologists engaged in discussions of global medical morality (Kleinman, Das, and Lock; Farmer, 1997; Kleinman, Fox, and Brandt; Das). Ethnography, which unifies the work of anthropologists, is more than a methodological orientation allowing fine-grained attention to local social and cultural processes. Rather, its theoretical foundation requires that the ethnographer draw connections between local suffering and global social and political processes.

Despite some improvement over the years, the health gaps persevere and in some instances have gotten worse as the twenty-first century began. In 1970 infant mortality in blacks was twice that of whites; at the beginning of the twenty-first century, black infant mortality is still twice that of whites. In 1970 deaths due to asthma were about three times higher in blacks; at the beginning of the twenty-first century, deaths due to asthma have increased: They are now five times higher than in whites (Centers for Disease Control, 1996). Researchers Robert Levine and his colleagues report that the disparities have not improved since the end of World War II, despite decades of funding for health-related programs. Some observers attribute the health gap to biology, suggesting that excess infant deaths and disproportionate incidences of lung cancer and breast cancer deaths are due to genetic differences. Others attribute the high rate of sickness and death to irresponsible lifestyles. According to this explanation, African-American women and men refuse or neglect to get timely cancer screenings until it is too late to curb the spread of the condition, or they prefer to smoke highnicotine content cigarettes and drink high-alcohol content liquor that increase lung and liver disease (Moore, Williams, and Qualls). Still others attribute the disparity in health status to cultural attitudes and deficits that prevent healthseeking behaviors that take advantage of available health services; patient and family beliefs at variance with those of medical professionals; and negative attitudes toward healthcare providers. This explanation, for example, asserts that African Americans prefer dialysis to a kidney transplant (Ayanian et al.). In particular, many authors single out suspicion of the healthcare system as a barrier to seeking care. Indeed, many African Americans fear that they will become guinea pigs for unethical medical research (Thomas and Quinn; Dula).

What are health disparities and why are they ethical violations? Olivia Carter-Pokras and Claudia Baquet discuss a number of definitions that have emerged since 1985, when the U.S. Department of Health and Human Services issued the Report of the Secretary’s Task Force on Black and Minority Health. The Task Force defines health disparities as excess mortality of minorities as compared to that of whites. Healthy People 2010, whose goal is to eliminate disparities, defines them as differences that occur by gender, race or ethnicity, education or income, disability, and residence in rural localities. The National Institutes of Health (NIH) defines disparities as differences in incidence, prevalence, mortality, and burden of disease (Carter-Pokras and Baquet). According to reports from the Centers for Disease Control (CDC), African Americans have higher death rates than whites due to cancers, diabetes, cirrhosis, homicide, AIDS, and cardiovascular diseases. Maternal death is between three and four times higher for black women than for white women. More white women have breast cancer, but the death rate is higher in black women and is increasing. The excessive rates of illness contribute to the higher mortality rate of African Americans; the National Vital Statistics Report puts life expectancy for white women at 80.0 years; 74.9 years for black women; 74.8 years for white men; and for black men it is 68.2 years (Arias). Beginning with slavery and continuing throughout the twentieth century, a persistent and disturbing gap has characterized the health status of African Americans and whites. At emancipation public health officials predicted that freedom would lead to the extinction of the former slaves, who did, in fact suffer numerous health problems, including tuberculosis, malaria, excessive malnutrition, pellagra, and syphilis. The disparities continued throughout the twentieth century and into the beginning of the twenty-first.

Some authors (Clements and Sider; Callahan; Thomasma) have criticized the centrality of autonomy in medical decision making. Their argument states that the primary obligation of healthcare providers is to maintain and restore health. There are two aspects to this claim. First, if patient autonomy is given primacy over the obligations of health professionals, physicians and other providers may violate their obligation to maintain and restore the health of patients; for example, a patient may refuse a treatment that will save his or her life or prevent a serious illness. These conflicts between autonomy and patient benefit have often been decided by courts, usually in the form of a request by a terminally ill patient’s family member, or other agent, that life-preserving treatments such as respirators be withdrawn, a request denied by physicians who cite their obligation to preserve life. A second aspect of the criticism of autonomy recognizes the centrality of patients’ values and wishes in cases of deciding whether to forgo life-preserving treatment for a terminally ill patient, but other sorts of medical-care decisions depend less on respecting patients’ rights to autonomy and more on the value of restoring and maintaining the capacity for living a meaningful life. In this sort of case, autonomy is secondary to principles of beneficence, compassion, and caring. Defenders of autonomy can make several replies to this critique. (1) Some of the attacks on autonomy wrongly assume that it is simply a principle of negative freedom, that is, the right not to be interfered with. (2) The claim of the centrality of patient autonomy in medicine does not imply that it is the only value. The principles of beneficence or nonmaleficence may, in some circumstances, justify paternalism. (3) Autonomy cannot be ignored in medical decision making. Knowing what will be most beneficial for a patient often requires input from the patient on values, objectives, and preferences. This is true not only in morally difficult situations that call for a decision about preserving the life of a terminally ill patient, but in less dramatic cases as well, for example, whether a patient should have surgery for a condition that causes minor discomfort and dysfunction but will not develop into something more threatening to health, or whether the patient should simply “live with” the condition. In cases of acute and severe injury or illness where there is clearly a best treatment that will almost certainly restore the patient to health, it can usually be safely assumed that whatever else the patient values, he or she will value the restoration of health, and hence, discussion of the relative value of options and their consequences is not required to respect the autonomy of the patient.

Autonomy as a fundamental right is used to justify rights to privacy, confidentiality, refusal of treatment, informed consent, and a decent minimum of healthcare. The legal right to privacy has two components. The right to control information about oneself is protected in medicine as the patient’s right to confidentiality of information gained by health professionals. The right not to be interfered with and to make one’s own decisions is protected in medicine as a competent patient’s right to refuse recommended treatment and as the obligation of health professionals to obtain a patient’s informed consent to treatment. Informed consent requires that a patient be informed of a recommended treatment and of the options for treatment and their likely consequences, and that the patient give express permission for a treatment (often in writing). The right to autonomy also requires that patients be told the truth about their medical status and prognosis, that their questions be answered, and that they receive assistance from healthcare providers in making rational decisions. Meaningful exercise of the right to autonomy in living requires that individuals possess physical and psychological capacities within the normal, human range. So the positive right to autonomy supports a right to a level of healthcare that will return and maintain a person to the normal range of functioning. This includes acute care, for example, repair of a broken bone; chronic care, for example, treatment of diabetes or heart disease; and supportive care for permanent disability, for example, wheelchairs for paraplegics. Paternalism in healthcare is treating a patient against his or her wishes on the grounds that the healthcare provider is professionally obligated to provide care that will benefit patients, and that the healthcare provider knows better than the patient what is good for the patient. When paternalism is justified, it overrides patient autonomy, at least partially. An example of justified paternalism could be when a physician does not accede to a patient’s refusal of emergency treatment because the patient believes he or she will surely die.