Toward An African-American Perspective On Bioethics

259 Guest editorial TOWARD AN AFRICAN-AMERICAN PERSPECTIVE ON BIOETHICS ANNETTE DULA, Ed.D. Visiting Scholar Center for Values and Social Policy Philosophy Department Campus Box 232 University of Colorado at Boulder Boulder 80309-0232 Over the last twenty years, the field of bioethics has assumed major importance, as advances in medical technology and rising costs of health care have forced society to come to terms with difficult ethical choices surrounding life and death, allocation of resources, and doctor/patient relationships. Today, one finds university departments and academic programs, hospital ethics committees, bioethics think tanks, and Presidential task forces devoted to medical ethics policy and decision-making. Furthermore, numerous conferences , journals, and books disseminate information and knowledge generated by the new profession. However, the mainstream literature emerging from this influential new field rarely includes discussions of race, class, and gender. Influential ethics centers, such as the Hastings Center in Briarcliff Manor, New York, do address cultural issues, but primarily from an international perspective. One reason for the dearth of critical discussion of cultural and social issues here in the United States may be the demographic makeup of bioethicists. Although feminist bioethicists are beginning to have a louder voice, the field is dominated by white, male, middle-class professionals and academics. These men decide what is important, they frame questions, and they make policy recommendations. The voices of those outside of the power circle—racial minorities, the poor, women—have been excluded from ongoing debates on ethics and health care policy. At best, such exclusion from decision-making results in paternalistic decisions made for the "good" of the powerless. At worst, it victimizes the Journal of Health Care for the Poor and Underserved, Vol. 2, No. 2, Fall 1991 260 African-American Bioethics powerless. For example, as Fox points out in her discussion of the sociology of bioethics, "relatively little attention has been paid [by bioethicists] to the fact that a disproportionately high number of the extremely premature, very low birthweight infants, many with severe congenital abnormalities, [who are] cared for in NICU [neonatal intensive care units,] are babies born to poor, disadvantaged mothers, many of whom are single nonwhite teenagers."1 I aim to show that the articulation and development of professional bioethics perspectives by minority academics is necessary to expand the narrow margins of debate. Without representation by every sector of society, the powerful and powerless alike, the discipline of bioethics is missing the opportunity to be enriched by the inclusion of a broader range of perspectives. Although I use African-American perspectives as an example, these points apply to other racial and ethnic groups—Hispanics, Native Americans, Asians— who have suffered similar health care experiences. In the first section of this paper, I suggest that an African-American perspective on bioethics has two bases: 1) our health and medical experiences, and 2) our tradition of black activist philosophy. In the second section, I show through examples that an unequal power relationship has led to unethical medical behavior toward blacks, especially regarding reproductive issues. In the third section, I argue that developing a professional perspective not only gives voice to the concernsof those not in the power circle, but enriches the entire field of bioethics. Medical and health experiences The health of a people and the quality of health care they receive reflect their status in society. It should come as little surprise, then, that AfricanAmericans ' health experiences differ vastly from those of white people. These differences are well-documented. Compared to whites, more than twice as many black babies are born with low birthweight2 and twice as many die before their first birthday.3 Fifty percent more blacks than whites are likely to regard themselves as in fair or poor health.4 Blacks are included in fewer trials of new drugs5—an inequity of particular importance for AIDS patients, who are disproportionately black and Hispanic. The mortality rate for heart disease in black males is twice that for white males; recent research has shown that blacks tend to receive less aggressive treatment for this condition.6 More blacks die from cancer, which, unlike in whites, is likely to be systemic by the time it is detected.2 African...