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Society's Choices: Social and Ethical Decision Making in Biomedicine
norities, women) and arenas (government, industry, hospitals) shape public ethical discourse on biomedical developments.
ACTORS SHAPING THE SOCIAL CONTEXT FOR BIOETHICS
Advances in biomedicine do not occur in a vacuum-they are applied within a rich and varied cultural context, with different impacts on diverse social groups. Over the past three decades, the empowerment of certain groups within U.S. society, from minorities to women, from gays and lesbians to health care consumers and patients, has contributed new and distinct voices to the debate surrounding advances in medicine and health policy. While the emergence of these groups occurred roughly contemporaneously and in a somewhat interrelated fashion, each group is treated separately below in order to highlight its own unique perspective.
Minorities: A History of Distrust
The civil rights movement born in the 1960s brought institutional racism and entrenched social inequalities to the forefront of national attention. From the 1959 bus boycotts to the March on Washington in 1963, from the Freedom Riders to the Black Panthers, the movement chipped away at discrimination and instilled a collective consciousness and pride that coalesced African Americans into a powerful interest group (Branch, 1988; Garrow, 1989). While health care was not at the top of the movement's agenda, issues of distributive justice were; the 1963 March on Washington was not only about race discrimination, but also about poverty and economic opportunity. The movement provided impetus for President Johnson's "war on poverty," declared in 1964, which led to passage of Medicaid and other antipoverty programs; data show that after passage of Medicaid, utilization of medical services by the poor increased sharply (Starr, 1983).
Two events in the early 1970s highlighted the racism endemic to the U.S. health establishment and further entrenched the African American community's distrust of medicine: the Tuskegee Syphilis Study (see Chapter 1) and the African American community's experience with sickle cell anemia screening programs. The Tuskegee Syphilis Study has become the most potent symbol to African Americans and other minorities of racist exploitation by the public health community (Jones, 1993). Public outrage over the study was enormous and provided the impetus for the eventual crafting of federal regulations protecting human subjects. However, the study left another legacy that can still be felt today: a profound suspicion and distrust by the minority community of the motives of the U.S. medical