Minority Health and Health Equity Archive
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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 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 "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.Item Presidential panel excoriates former Pitt dean(2011) Ove, TorstenA presidential ethics panel today excoriated the late Dr. John Cutler, a revered dean at the University of Pittsburgh in the 1960s, and his colleagues at the U.S. Public Health Service for deliberately infecting hundreds of Guatemalan prisoners, mental patients, soldiers and prostitutes with syphilis from 1946 to 1948, including 83 who died. The Presidential Commission for the Study of Bioethical Issues concluded that Dr. Cutler's experiments were morally indefensible, even for the standards of the time, and that he and his fellow doctors tried to keep secret what they were doing because they knew it was wrong.Item Panel to report on controversial medical research project(2011) Ove, TorstenA presidential panel investigating a controversial 1940s medical research project in Guatemala led by a doctor who later became a prominent professor and dean at the University of Pittsburgh will discuss its findings on Monday at a public meeting in Washington, D.C. Since last fall, the Presidential Commission for the Study of Bioethical Issues has been investigating U.S. Public Health Service experiments conducted by Dr. John Cutler in which he deliberately infected almost 700 Guatemalan prisoners, mental patients and soldiers with syphilis without their knowledge. After issuing an apology for the research, President Barack Obama directed his bioethics panel to…Item Misinformation and misbeliefs in the Tuskegee Study of Untreated Syphilis fuel mistrust in the healthcare system.(2005) White, Robert MThe Tuskegee Study of Untreated Syphilis (TSUS) is an important issue in research, healthcare, ethics and race relations. The assumed consequences of knowledge of this study on the African-American community include mistrust of the healthcare system. In the July 2005 issue of the Journal of the National Medical Association, Brandon, Isaac and LaVeist (the authors), who were at the Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, reported the results of black-white differences in awareness of and knowledge about the TSUS and the effect of that awareness and knowledge on medical mistrust. The study surveyed blacks, whites and others in the Baltimore, MD community about their knowledge of and attitudes about the TSUS. The respondents who were aware of the TSUS were asked survey items to assess specific factual information about the TSUS. The respondents who were not aware of the TSUS were read a brief description of the TSUS taken from the CDC website. Both groups were asked if a similar study was possible today. The authors performed a regression analysis of mistrust of medical care based on race, knowledge of the TSUS and demographic variables. The editorial identified and explained challenges in the article, i.e., challenges in calculations, demographic analysis by race, knowledge of TSUS, cultural sensitivity and methodology. The authors miscalculated the "similar proportions" of blacks and whites who were aware of the TSUS; the recalculated proportions, favoring whites, were different than reported by others. There was no demographic analysis by race in their article--also different than other published reports. Most respondents--blacks and whites--who were aware of the TSUS at baseline answered incorrectly the author-selected questions about the TSUS, particularly the fact-based question of whether the TSUS researchers gave syphilis to the men-not dissimilar to one other report. The source for TSUS information (the CDC website) that was used to educate respondents who were not aware of the TSUS at baseline had contradictions, errors and challenges in black history, medical and public health history, and women's studies. The content of what was actually read to respondents was unknown. Proportionally more whites who were not aware of the TSUS but who were read author-selected information about the TSUS believed that a similar study could happen today-a belief and possibly mistrust of medical care that appeared to be induced-compared to whites with prestudy awareness of the TSUS but not read information from the CDC website. Both black groups were not dissimilar from each other. The authors used a survey that measured a race difference in response to a medical event (TSUS) specific to only one racial group (blacks) when there were inclusive examples specific to other groups available. The authors used "Tuskegee" as a single-word sound bite for the TSUS--a misuse that was inappropriate in scientific and research discourse and that may fuel mistrust of medical care. Whether knowledge of the TSUS was a predictor of mistrust of the healthcare system was inconclusive based on the results in the authors' article. The core findings of the article made believing their case difficult. The editorial suggested that bias and misinformation in undertaking, analysis and reporting the study may in itself fuel mistrust in medical care in the community. Because of these challenges, the editorial urged caution with regard to any change in research direction or policy debate based on the results reported in the article.Item The Tuskegee Syphilis Experiment: biotechnology and the administrative state.(1995) Roy, BThe central issue of the Tuskegee Syphilis Experiment was property: property in the body and intellectual property. Once removed from the body, tissue and body fluids were not legally the property of the Tuskegee subjects. Consequently, there was not a direct relationship between a patient and research that used his sera. The Public Health Service (PHS) was free to exercise its property right in Tuskegee sera to develop serologic tests for syphilis with commercial potential. To camouflage the true meaning, the PHS made a distinction between direct clinical studies and indirect studies of tissue and body fluids. This deception caused all reviews to date to limit their examination to documents labeled by the PHS as directly related to the Tuskegee Syphilis Experiment. This excluded other information in the public domain. Despite the absence of a clinical protocol, this subterfuge led each to falsely conclude that the Tuskagee Syphilis Experiment was a clinical study. Based on publications of indirect research using sera and cerebrospinal fluid, this article conceives a very history of the Tuskagee Syphilis Experiment. Syphilis could only cultivate in living beings. As in slavery, the generative ability of the body made the Tuskegee subjects real property and gave untreated syphilis and the sera of the Tuskegee subjects immense commercial value. Published protocols exploited the Tuskegee Syphilis Experiment to invent and commercialize biotechnology for the applied science of syphilis serology.Item Lasting Legacy: AN APOLOGY 65 YEARS LATE(1997) HUNTER-GAULT, CHARLAYNEBeginning in 1932, the federal government sponsored a study to examine the impact of syphilis involving black men. The experiment went on until 1972 without the test subjects' knowledge, but no President had apologized to the volunteers and their families until President Clinton did so today. Following a background report on the experiment, Charlayne Hunter-Gault looks at what the legacy of Tuskegee.Item CDC Report on Findings from the U.S. Public Health Service Sexually Transmitted Disease Inoculation Study of 1946–1948, Based on Review of Archived Papers of John Cutler, MD, at the University of Pittsburgh(2010) Centers for, Disease ControlFrom 1946–1948, the U.S. Public Health Service (USPHS) Venereal Disease Research Laboratory (VDRL) and the Pan American Sanitary Bureau collaborated with several government agencies in Guatemala on U.S. National Institutes of Health-funded studies involving deliberate exposure of human subjects with bacteria that cause sexually transmitted diseases (STD). Guatemalan partners included the Guatemalan Ministry of Health, the National Army of the Revolution, the National Mental Health Hospital, and the Ministry of Justice. Studies were conducted under the on-site direction of John C. Cutler, MD, in Guatemala City, who worked under the supervision of R.C. Arnold, MD, and John F. Mahoney, MD, of the USPHS VDRL in Staten Island, New York. The primary local collaborator was Dr. Juan Funes, chief of the VD control division of the Guatemalan Sanidad Publica. The work by Dr. Cutler and VDRL colleagues was recently brought to light by Professor Susan Reverby of Wellesley College, as a result of archival work conducted as part of the research of her 2009 book on PHS syphilis studies, Examining Tuskegee.Item Inside the National Archives: The Tuskegee Study (1930s-1972)(2008) UNSPECIFIEDThroughout the study, the Public Health Service took photographs for its files. The images survive uncaptioned. Nurse Rivers, who was held in high regard by the participants, is the only person identified in the photographs.Item Tuskegee Legacy Discourages Trial Participation by Blacks(2008) Gever, JohnAfrican Americans are still suspicious of the clinical research establishment, some 35 years after details of the infamous Tuskegee study of untreated syphilis were revealed, researchers here said. More than twice as many blacks as white believe physicians secretly experiment on patients, reported Neil R. Powe, M.D., M.P.H., and colleagues at Johns Hopkins in the January issue of Medicine. The researchers said this was the first study to quantify different perceptions of risk associated with clinical trials by race. They wanted to explore the difficulty noted by many earlier researchers in enrolling African-American participants in clinical trials.