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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Item Obama bioethics panel: Teach history of US-led STD experiments on Guatemalans(2012) Viebeck, EliseItem Item The National Bioethics Research Infrastructure Initiative: Building Trust Between Minorities and Researchers.(University of Maryland Center for Health Equity, 2012) Thomas, Stephen B.This video short is one product of our Building Trust between Minorities and Researchers training curriculum. This work is made possible through a grant from the NIH National Institute on Minority Health and Health Disparities. For more information visit www.healthequity.umd.eduItem Eighty Years of Bad Blood: The Evolution of Human Research after the Tuskegee Study(2012) Cook, Brett D.; Jackson, Tahmika RuthThe year 2012 marks the eightieth anniversary of the beginning of the U.S. Public Health Service’s (PHS) study on the effects of untreated syphilis in Tuskegee, AL, which lasted from 1932 to 1972. The research continued after penicillin became widely available and was known to be an effective treatment for syphilis. To justify the experiments, the PHS argued that the study was a never-to-be-repeated opportunity. Did the U.S. government continue to take advantage of never-to-be-repeated opportunities in medical research by using unethical justifications? This manuscript will explore how America’s growing understanding of human research and the rights of human subjects have mirrored the growth of regulatory law and jurisprudence since the Tuskegee Study. We will examine PHS human research experiments in Guatemala from 1946 to 1948, as well as the U.S. Department of Justice’s decision not to prosecute members of the Japanese Army despite having received information on human experiments they conducted on World War II Prisoners of War (POWs). We recognize that numerous events have contributed to current human research practices and it would be impossible to discuss every significant topic. We submit that society’s ethical considerations regarding human research have progressed over the past eighty years. In this article we concentrate on the growing protections of the right to informed consent. We contend that constant and consistent oversight by the three branches of U.S. government is necessary to ensure human rights protection of those classes least able to protect themselves and prevent another Tuskegee Study.Item LINKING INTERATIONAL RESEARCH TO GLOBAL HEALTH EQUITY: THE LIMITED CONTRIBUTION OF BIOETHICS(2011) PRATT, BRIDGET; LOFF, BEBEAbstract available at publisher's website.Item Moral Science: Protecting Participants in Human Subjects Research(2011) UNSPECIFIEDThe Presidential Commission for the Study of Bioethical Issues today issued its report concerning federally-sponsored research involving human volunteers, concluding that current rules and regulations provide adequate safeguards to mitigate risk. In its report, “Moral Science: Protecting Participants in Human Subjects Research," the Commission also recommended 14 changes to current practices to better protect research subjects, and called on the federal government to improve its tracking of research programs supported with taxpayer dollars. President Obama requested that the Commission undertake an assessment of research standards following the October 2010 revelation that the U.S. Public Health Service supported unethical research in Guatemala from 1946 to 1948 that involved intentionally exposing thousands of Guatemalans to sexually transmitted diseases without their consent. The President gave the Bioethics Commission two assignments: to oversee a thorough fact-finding investigation into the specifics of the studies (released September 13, 2011); and to assure that current rules for research participants protect people from harm or unethical treatment, domestically as well as internationally.Item Improvements, database urged in wake of 1940s research(2011) Ove, TorstenA presidential ethics panel said that federally sponsored research involving human subjects provides adequate safeguards to reduce risk but also recommended some improvements such as the creation of a central, publicly available database to keep track of experiments. In a report released today, the Presidential Commission for the Study of Bioethical Issues suggested 14 changes to current practices and called on the federal government to improve the way it monitors research supported by taxpayers. The report is the second phase of a government mission undertaken in the wake of revelations in 2010 that John Cutler, a former U.S. Public Health…Item 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 MThe 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.Item "Ethically Impossible" STD Research in Guatemala from 1946 to 1948(2011) UNSPECIFIEDFollowing the revelation last fall that the PHS supported research on sexually transmitted diseases in Guatemala from 1946 to 1948, President Obama asked the Bioethics Commission to oversee a thorough fact-finding investigation into the studies. Commission staff carefully reviewed more than 125,000 original pages of documents and approximately 550 secondary sources collected from public and private archives around the country. Commission staff also completed a fact finding trip to Guatemala and met with Guatemala’s own internal investigation committee. The PHS research involved intentionally exposing and infecting vulnerable populations to sexually transmitted diseases without the subjects’ consent. “In the Commission’s view, the Guatemala experiments involved unconscionable basic violations of ethics, even as judged against the researchers’ own recognition of the requirements of the medical ethics of the day,” Commission Chair Amy Gutmann, Ph.D., said. “The individuals who approved, conducted, facilitated and funded these experiments are morally culpable to various degrees for these wrongs.” The full report, Ethically Impossible: STD Research in Guatemala from 1946-1953, also includes the Commission’s ethical analysis of the case.