Minority Health and Health Equity Archive

Permanent URI for this collectionhttp://hdl.handle.net/1903/21769

Welcome to the Minority Health and Health Equity Archive (MHHEA), an electronic archive for digital resource materials in the fields of minority health and health disparities research and policy. It is offered as a no-charge resource to the public, academic scholars and health science researchers interested in the elimination of racial and ethnic health disparities.

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Now showing 1 - 10 of 23
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    The legacy of the Tuskegee Syphilis Study: assessing its impact on willingness to participate in biomedical studies.
    (2008) Katz, Ralph V; Green, B Lee; Kressin, Nancy R; Kegeles, S Stephen; Wang, Min Qi; James, Sherman A; Russell, Stefanie L; Claudio, Cristina; McCallum, Jan M
    The phrase, 'legacy of the Tuskegee Syphilis Study', is sometimes used to denote the belief that Blacks are more reluctant than Whites to participate in biomedical research studies because of the infamous study of syphilis in men run by the U.S. Public Health Service from 1932-72. This paper is the first to attempt to assess directly the accuracy of this belief within a multi-city, multi-racial, large-scale, detailed random survey. We administered the Tuskegee Legacy Project (TLP) Questionnaire to 826 Blacks and non-Hispanic White adults in three U.S. cities. While Blacks had higher levels of general awareness of the Tuskegee Syphilis Study, there was no association between either awareness or detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, either for Blacks or Whites observed in our survey. While this study refutes the notion that there is a direct connection between detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, it does not assess the broader question of whether and how historical events influence people's willingness to participate in research. Future studies should explore this.
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    The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation.
    (1999) Corbie-Smith, G
    The Tuskegee Study, an observational study of over 400 sharecroppers with untreated syphilis, was conducted by the U.S. Public Health Service to document the course of the disease in blacks, and racial differences in the clinical manifestations of syphilis. The men were not told they had syphilis, not given counseling on avoiding spread of the disease, and not given treatment throughout the course of the study. The study became the longest (1932-1972) nontherapeutic experiment on humans in the history of medicine, and has come to represent not only the exploitation of blacks in medical history, but the potential for exploitation of any population that may be vulnerable because of race, ethnicity, gender, disability, age or social class. It is important for physicians who will be caring for an increasingly diverse nation to understand the lasting implications of this study for their patients, but the effects of the Tuskegee Syphilis Study are demonstrated most strikingly by unsuccessful attempts at improving representation of minority patients in clinical trials.
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    The ‘Tuskegee Study’ of syphilis: Analysis of moral versus methodologic aspects
    (1978) BENEDEK, T
    The background and course of the prospective investigation of the “natural history” of syphilis which was conducted by the U.S. Public Health Service in Macon County, Alabama from 1932 to 1972 (the “Tuskegee Study”) is reviewed. Unpublished correspondence is cited to illustrate some of the attitudes and problems of the investigators. The relevance of certain other studies of syphilis to the interpretation of the Tuskegee data which were not discussed by the investigators is shown. The study is analyzed by the application of some general principles of scientific investigation set forth at the beginning of the article.
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    Awareness of the Tuskegee Syphilis Study and the US Presidential Apology and Their Influence on Minority Participation in Biomedical Research
    (2008) Katz, R. V.; Kegeles, S. S.; Kressin, N. R.; Green, B. L.; James, S. A.; Wang, M. Q.; Russell, S. L.; Claudio, C.
    OBJECTIVES: We compared the influence of awareness of the Tuskegee Syphilis Study and the presidential apology for that study on the willingness of Blacks, non-Hispanic Whites, and Hispanics to participate in biomedical research. METHODS: The Tuskegee Legacy Project Questionnaire was administered to 1133 adults in 4 US cities. This 60-item questionnaire addressed issues related to the recruitment of minorities into biomedical studies. RESULTS: Adjusted multivariate analysis showed that, compared with Whites, Blacks were nearly 4 times as likely to have heard of the Tuskegee Syphilis Study, more than twice as likely to have correctly named Clinton as the president who made the apology, and 2 to 3 times more likely to have been willing to participate in biomedical studies despite having heard about the Tuskegee Syphilis Study (odds ratio [OR]=2.9; 95% confidence interval [CI]=1.4, 6.2) or the presidential apology (OR=2.3; 95% CI=1.4, 3.9). CONCLUSIONS: These marked differences likely reflect the cultural reality in the Black community, which has been accustomed to increased risks in many activities. For Whites, this type of information may have been more shocking and at odds with their expectations and, thus, led to a stronger negative impact.
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    Remembering Tuskegee Syphilis Study Still Provokes Disbelief, Sadness
    (2002) Chadwick, Alex
    Thirty years ago today, the Washington Evening Star newspaper ran this headline on its front page: "Syphilis Patients Died Untreated." With those words, one of America's most notorious medical studies, the Tuskegee Syphilis Study, became public. "For 40 years, the U.S. Public Health Service has conducted a study in which human guinea pigs, not given proper treatment, have died of syphilis and its side effects," Associated Press reporter Jean Heller wrote on July 25, 1972. "The study was conducted to determine from autopsies what the disease does to the human body."
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    Twenty years after. The legacy of the Tuskegee Syphilis Study. Outside the community
    (1992) Edgar, Harold
    Twenty years ago, when the Washington Star told the public that the United States Public Health Service had, since 1932, maintained a study of untreated syphilis in the Negro male that was still going on, my reaction was, How could people have done this? I later worked on the participants' lawsuit, and I learned of the study's many complexities. In the end, though, the best explanation of "how" it could have happened is the obvious one: the researchers did not see the participants as part of "their" community or, indeed, as people whose lives could or would be much affected by what the researchers did.
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    Under the shadow of Tuskegee: African Americans and health care
    (1997) Gamble, Vanessa
    The Tuskegee Syphilis Study continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community. Numerous reports have argued that the Tuskegee Syphilis Study is the most important reason why many African Americans distrust the institutions of medicine and public health. Such an interpretation neglects a critical historical point: the mistrust predated public revelations about the Tuskegee study. This paper places the syphilis study within a broader historical and social context to demonstrate that several factors have influenced--and continue to influence--African American's attitudes toward the biomedical community.
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    Racism and Research: The Case of the Tuskegee Syphilis Study
    (1978) Brandt, Allan M.
    In 1932 the U.S. Public Health Service (USPHS) initiated an experiment in Macon County, Alabama, to determine the natural course of untreated, latent syphilis in black males. The test comprised 400 syphilitic men, as well as 200 uninfected men who served as controls. The first published report of the study appeared in 1936 with subsequent papers issued every four to six years, through the 1960s. When penicillin became widely available by the early 1950s as the preferred treatment for syphilis, the men did not receive therapy. In fact on several occasions, the USPHS actually sought to prevent treatment. Moreover, a committee at the federally operated Center for Disease Control decided in 1969 that the study should be continued. Only in 1972, when accounts of the study first appeared in the national press, did the Department of Health, Education and Welfare halt the experiment.
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    When Evil Intrudes (Twenty Years After: The Legacy of the Tuskegee Syphilis Study)
    (1992) Caplan, Arthur L.
    Twenty years ago Peter Buxtun, a public health official working for the United States Public Health Service, complained to a reporter for the Associated Press that he was deeply concerned about the morality of an ongoing study being sponsored by the Public Health Service--a study compiling information about the course and effects of syphilis in human beings based upon medical examinations of poor black men in Macon County, Alabama. The men, or more accurately, those still living, had been coming in for annual examinations for forty years. They were not receiving standard therapy for syphilis. In late July of 1972 the Washington Star and the New York Times ran front-page ...
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    Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?
    (2005) Wendler, David; Kington, Raynard; Madans, Jennifer; Wye, Gretchen Van; Christ-Schmidt, Heidi; Pratt, Laura A.; Brawley, Otis W.; Gross, Cary P.; Emanuel, Ezekiel
    Background: It is widely claimed that racial and ethnic minorities, especially in the US,are less willing than non-minority individuals to participate in health research. Yet,there is a paucity of empirical data to substantiate this claim. Methods and Findings: We performed a comprehensive literature search to identify all puublished health research studies that report consent rates by race or ethnicity. We found 20 health research studies that reported consent rates by race or ethnicity. These 20 studies reported the enrollment decisions of over 70,000 individuals for a broad range of research,from interviews to drug treatment to surgical trials. Eighteen of the twenty studies were single-site studies conducted exclusively in the US or multi-site studies where the majority of sites (i.e., at least 2/3) were in the US. Of the remaining two studies, the Concorde study was conducted at 74 sites in the United Kingdom, Ireland, and France, while the Delta study was conducted at 152 sites in Europe and 23 sites in Australia and New Zealand. For the three interview or non-intervention studies, African-Americans had a nonsignificantly lower overall consent rate than non-Hispanic whites (82.2% versus 83.5%; odds ratio [OR] ¼ 0.92; 95% confidence interval [CI] 0.84–1.02). For these same three studies, Hispanics had a nonsignificantly higher overall consent rate than non-Hispanic whites (86.1% versus 83.5%; OR ¼ 1.37; 95% CI 0.94–1.98). For the ten clinical intervention studies, African-Americans’ overall consent rate was nonsignificantly higher than that of non-Hispanic whites (45.3% versus 41.8%; OR¼1.06; 95% CI 0.78–1.45). For these same ten studies, Hispanics had a statistically significant higher overall consent rate than non-Hispanic whites (55.9% versus 41.8%; OR¼1.33; 95% CI 1.08–1.65). For the seven surgery trials, which report all minority groups together, minorities as a group had a nonsignificantly higher overall consent rate than non-Hispanic whites (65.8% versus 47.8%; OR ¼ 1.26; 95% CI 0.89–1.77). Given the preponderance of US sites, the vast majority of these individuals from minority groups were African-Americans or Hispanics from the US. Conclusions We found very small differences in the willingness of minorities, most of whom were African-Americans and Hispanics in the US, to participate in health research compared to non-Hispanic whites. These findings, based on the research enrollment decisions of over 70,000 individuals, the vast majority from the US, suggest that racial and ethnic minorities in the US are as willing as non-Hispanic whites to participate in health research. Hence, efforts to increase minority participation in health research should focus on ensuring access to health research for all groups, rather than changing minority attitudes.