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Ethical Issues. Jewish Chronic Disease Hospital. In 1963, studies were undertaken at New York City's Jewish Chronic Disease Hospital to develop information on the nature of the human transplant rejection process.
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Jewish Chronic Disease Hospital • In 1963, studies were undertaken at New York City's Jewish Chronic Disease Hospital to develop information on the nature of the human transplant rejection process. • These studies involved the injection of live cancer cells into patients who were hospitalized with various chronic debilitating diseases. • Researchers said that consent had been given orally, but was not documented. They felt that documentation was unnecessary because it was customary to undertake much more dangerous medical procedures without the use of consent forms. • Further, patients were not told that they would receive cancer cells because, in the view of the investigators, this would frighten the patients unnecessarily. Investigators defended this view on the basis that they had good cause to predict that the cancer cells were going to be rejected. • Two of the physicians responsible for the research were put on probation for a year. Three years later, despite these sanctions, one of the researchers was elected president of the American Association for Cancer Research.
Tuskegee Syphilis Experiment • The Tuskegee syphilis experiment[1] (also known as the Tuskegee syphilis study or Public Health Service syphilis study) was a clinical study conducted between 1932 and 1972 in Tuskegee, Alabama, by the U.S. Public Health Service, to study the natural progression of untreated syphilis. • The Public Health Service, working with the Tuskegee Institute, began the study in 1932. Investigators enrolled in the study 399 impoverished African-Americansharecroppers from Macon County, Ala., infected with syphilis. For participating in the study, the men were given free medical exams, free meals and free burial insurance. • They were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for "bad blood," a local term used to describe several illnesses, including syphilis, anemia and fatigue. • The 40-year study was controversial for reasons related to ethical standards, primarily because researchers failed to treat patients appropriately after the 1940s validation of penicillin as an effective cure for the disease. Revelation of study failures led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent (with exceptions possible for U.S. Federal agencies which can be kept secret by Executive Order), communication of diagnosis, and accurate reporting of test results.[3] • By 1947 penicillin had become the standard treatment for syphilis. Choices might have included treating all syphilitic subjects and closing the study, or splitting off a control group for testing with penicillin. Instead, the Tuskegee scientists continued the study, withholding penicillin and information about it from the patients. In addition, scientists prevented participants from accessing syphilis treatment programs available to others in the area. The study continued, under numerous supervisors, until 1972, when a leak to the press resulted in its termination. Victims included numerous men who died of syphilis, wives who contracted the disease, and children born with congenital syphilis.
Willowbrook State School • Willowbrook State School, built in the late 1930’s, was a state-supported institution for mentally retarded children located in central Staten Island in New York City • The subjects, all children, were deliberately infected with the hepatitis virus; • early subjects were fed extracts of stools from infected individuals and later subjects received injections of more purified virus preparations. Investigators defended the deliberate injection of these children by pointing out that the vast majority of them acquired the infection anyway while at Willowbrook, and perhaps it would be better for them to be infected under carefully controlled research conditions • During the course of these studies, Willowbrook closed its doors to new patients, claiming overcrowded conditions. However, the hepatitis program, because it occupied its own space at the institution, was able to continue to admit new patients. Thus, in some cases, parents found that they were unable to admit their child to Willowbrook unless they agreed to his or her participation in the studies. This case caused a public outcry forcing the study to be discontinued because of the perception that parents and their children were given little choice about whether or not to participate in research
Tearoom Trade Study • A researcher was interested in the men who participated in sexual activity in a public place, that is, their personal characteristics and the nature of the sexual activity. His first step was to engage in observation of such activity in a public restroom in a park within a large city; these places were known as "tearooms." The general pattern was for the men to drive to the park, enter the public restroom, and engage in the desired behavior. The researcher often served as what was called the "watch queen," that is, a lookout to prevent individuals who might cause trouble from interrupting the sexual activity. In general, interruptions of the activity occurred due to the presence of local teenagers or police. This activity was technically illegal when the study was done (in the 1960s), so it would have been troublesome if the police arrived on the scene. • He gathered his information on 50 sex acts (mostly oral sex) involving over 100 men. Then he obtained personal information about these individuals. He copied down their license plate numbers, went to the police and, giving a false cover story, obtained names and addresses based on the license plates, and subsequently interviewed the men. He informed them that it was part of a marketing research project. • Analysis of responses to the interview revealed that "when the characteristics of the participants were compared with those of typical males from the same urban area, no striking differences in terms of occupations, marital status, socioeconomic characteristics, and the like were found. Aside from their participation in clandestine homosexual activity, there was little to distinguish these men from typical adult males" (Reynolds, 1982, p. 68).
