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Society's Choices: Social and Ethical Decision Making in Biomedicine
The estimated cost of the program was $65,000 to provide equipment, supplies, and personnel. All those screened were asked to contribute $5, and most did so. At-risk couples received counseling, and reports indicate that it was direct, careful, and sensitive (Stine, 1977). The success of the initial Baltimore/Washington project was such that scores of Jewish communities around the United States followed suit and were later joined by Jewish communities in five other countries. By the early 1980s, over 310,000 Jews around the world had been screened voluntarily, leading to the identification of 268 couples in which both partners were carriers. In New York city, Hasidic Jews developed a program, the Chevra Dor Yeshorim program, to deter the marriage of partners who were both carriers of the Tay- Sachs gene (Merz, 1987).
The history of screening for sickle cell was very different. Perhaps most significantly, many of the screening programs were developed without adequate consultation and education of the affected communities (IOM, 1994). Little could be offered to high-risk couples once they were identified and safe prenatal diagnosis of sickle cell disease was not possible at the time (as it was for Tay-Sachs). The failure of the Black Panthers (who were among the first to start and favor sickle cell screening) as well as the politically motivated whites, to recognize the technological limitations made the experience of sickle cell screening a very negative one for the African American community. Some have also suggested that, while many of those who were managing or recruiting for these screening programs were doing so for health and medical reasons, a sizeable proportion came from community-based organizations that had a political agenda, including urban poverty programs and methadone clinics (Duster, 1990).
Rationalizing Health Care Priorities
One of the side effects of advances in biomedicine has been skyrocketing health care costs, particularly of the elderly, premature infants, and those with rare disorders. In contrast, preventive medicine has sometimes gotten short shrift, despite the demonstrable cost savings to society. This situation has led to several attempts around the nation to ''rationalize" the allocation of health care. The most famous case has been the work of the Oregon Health Services Commission, which expanded the notion of community responses to include well-organized, focused, volunteer-led group discussion of vital health care issues. The higher-level initiative brought together citizens from different geographical, socioeconomic, and cultural communities.
In the mid-1980s, Oregon was faced with a series of very difficult decisions about the provision of transplants for poor children. The cost for one liver transplant was so high that the same amount of money could