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 Practicing participatory research in American Indian communities.(1999) Davis, S M; Reid, RThe purpose of this article is to explore the historical issues that affect research in American Indian communities and examine the implications of these issues as they relate to culturally sensitive, respectful, and appropriate research with this population. Methods include review and analysis of the literature and examination of our collective experience and that of our colleagues. Recommendations are given for conducting culturally sensitive, participatory research. We conclude that research efforts must build on the establishment of partnerships between investigators and American Indian communities to ensure accurate findings and analyses and to implement culturally relevant benefits.Item Toward an African-American perspective on bioethics.(1991) Dula, AOver the last twenty years, the field of bioethics has assumed major importance, as advances in medical technology and rising costs of health care have forced society to come to terms with difficult ethical choices surrounding life and death, allocation of resources, and doctor/patient relationships. Today, one finds university departments and academic programs, hospital ethics committees, bioethics think tanks, and Presidential task forces devoted to medical ethics policy and decision-making. Furthermore, numerous conferences, journals, and books disseminate information and knowledge generated by the new profession. However, the mainstream literature emerging from this influential new field rarely includes discussions of race, class and gender…Item Minority Access and Health Reform: A Civil Right to Health Care(1994) Watson, Sidney DeanWhether the racial disparities in treatment decisions are caused by differences in income and education, socio-cultural factors, or failures by the medical profession, they are unjustifiable and must be eliminated. Not only do the disparities violate fundamental principles of fairness, justice, and medical ethics, they may be part of the reason for the poor quality of health of minorities in the United States.Item Bad blood: the Tuskegee syphilis experiment(The Free Press, 1981) Jones, James HowardAn account of the experiment conducted by the U.S. Public Health Service describes how medical treatment was withheld from Black sharecroppers infected with syphilisItem The continuing legacy of the Tuskegee Syphilis Study: considerations for clinical investigation.(1999) Corbie-Smith, GThe 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.Item Historical background of clinical trials involving women and minorities.(1994) McCarthy, C RThe author provides a historical context for the difficult ethical and clinical issues associated with the inclusion of women and members of minority groups in clinical research. He cites as a point of departure the Nuremberg Code of the late 1940s, which declared the fundamental dignity of human beings involved as research subjects, a principle that was quickly endorsed worldwide. From the period following World War II through the 1970s, the prevailing attitude--not always practiced--toward research subjects in the United States was that they should be protected from exploitation. That attitude was reflected in the first broad federal policy on research subjects, created in 1966. During those years, research was widely regarded by the public as dangerous and of little value to individual participants; it is remarkable that so many men and women consented to participate in clinical studies at that time. Furthermore, during the 1970s, for reasons explained by the author, various events--the abortion debate, disclosures from the infamous Tuskegee syphilis study, Nixon's "war on cancer," new federal regulations in 1974 and 1975 (the latter providing additional protection for pregnant women in research), the broad interpretation of the FDA's 1977 policy excluding pregnant or potentially pregnant women from clinical trials, and the tendency of blacks and persons from other minority groups to shun participation in research--tended to deter participation of women and members of minority groups in clinical research.(ABSTRACT TRUNCATED AT 250 WORDS)Item The ‘Tuskegee Study’ of syphilis: Analysis of moral versus methodologic aspects(1978) BENEDEK, TThe 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.Item Sick and Tired of Being Sick and Tired: Black Women's Health Activism in America, 1890-1950(University of Pennsylvania Press, 1995) Smith , Susan L.Black health activism in the United States emerged at a time when the American welfare state was expanding and black rights were decreasing. From 1890 to 1950, a period of legalized segregation, many African Americans saw their struggle for improved health conditions as part of a political agenda for black rights, especially the right to equal access to government resources. Although it was difficult for a group with little influence on government to affect public policy, black activists struggled to draw federal attention to black health issues. They tried to make the health needs of black America a legitimate political concern for the nation. With great caution they entered the debate on the role of the state in the care of its citizens. Black health reform was gendered to the extent that men held most of the formal leadership positions and women did most of the grassroots organizing. Much like the black civil rights movement of the 1950s and 1960s, "men led, but women organized." 1 Black men played an important role in the black health movement as doctors,ministers,journalists, businessmen, and educators. Yet, men's leadership often came and went, while women's grassroots activity persisted.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.