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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Author: search.filters.author.Quinn, Sandra CrouseSubject: search.filters.subject.Bioethics

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Now showing 1 - 5 of 5
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    Ethics in public health research: protecting human subjects: the role of community advisory boards.
    (2004) Quinn, Sandra Crouse
    Increasingly, researchers grapple with meaningful efforts to involve communities in research, recognizing that communities are distinct from individuals. We also struggle to ensure that individual participants in research are fully protected. Community advisory boards (CABs) offer an opportunity to adopt a relationships paradigm that enables researchers to anticipate and address the context in which communities understand risks and benefits, and individuals give consent. CABs provide a mechanism for community consultation that contributes to protecting communities and fostering meaningful research. Furthermore, CABs can help us to re-create informed consent as a process. It is critical that we conduct research to understand the role of CABs in the informed consent process.
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    The Role of Community Advisory Boards: Involving Communities in the Informed Consent Process
    (2001) Strauss, Ronald P.; Sengupta, Sohini; Quinn, Sandra Crouse; Goeppinger, Jean; Spaulding, Cora; Kegeles, Susan M.; Millett, Greg
    Ethical research involving human subjects mandates that individual informed consent be obtained from research participants or from surrogates when participants are not able to consent for themselves.The existing requirements for informed consent assume that all study participants have personal autonomy; fully comprehend the purpose, risks, and benefits of the research; and volunteer for projects that disclose all relevant information. Yet contemporary examples of lapses in the individual informed consent process have been reported. The authors propose the use of community advisory boards, which can facilitate research by providing advice about the informed consent process and the design and implementation of research protocols. These activities could help reduce the number of individual informed consent lapses,benefiting study participants and the scientific integrity of the research in question.
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    Belief in AIDS as a Form of Genocide: Implications for HIV Prevention Programs for African Americans
    (1997) Quinn, Sandra Crouse
    The purpose of this article is to examine factors associated with belief that AIDS is a form of genocide and trust in federal government reports on AIDS in a cross-sectional sample of 1,054 black church members. Reports in both the professional literature and mass media have documented fears that AIDS is a form of genocide unleashed on black Americans, and distrust of reports on AIDS.Results from this study demonstrate that a substantial number of participants believe that belief in genocide is not accounted for by levels of AIDS knowledge. Belief in genocide may be a modern urban legend that need not be a barrier for AIDS education. Implications for development of AIDS education sensitive to the cultural context of African Americans are described.
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    Light on the Shadow of the Syphilis Study at Tuskegee
    (2000) Thomas, Stephen B.; Quinn, Sandra Crouse
    In the 1940s, with the disclosure that Nazi doctors had conducted experiments on humans, the term research crime appeared for the first time. Most Americans believed such abuses could never happen here. On a hot day in July 1972, however, the national front-page news described an experiment sponsored by the U.S. government. In Macon County, Alabama, a large group of Black men had gone untreated for syphilis. Over 4 decades, as some of them died, the U.S. government went to great lengths to ensure that the men in the Tuskegee Study were denied treatment, even after penicillin had become the standard of care in the mid-1940s
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    The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community
    (1991) Thomas, Stephen B; Quinn, Sandra Crouse
    The Tuskegee study of untreated syphilis in the Negro male is the longest nontherapeutic experiment on human beings in medical history. The strategies used to recruit and retain participants were quite similar to those being advocated for HIV/AIDS preention programs today. Almost 60 years after the study began, there remains a trail of distrust and suspicion that hampers HIV education efforts in Black communities. The AIDS epidemic has exposed the Tuskegee study as a histotical marker for legitimate discontent of Blacks with the public health system. The belief that AIDS is a form of genocide is rooted in a social context in which Black Americans, faced with persistent inequality, believe in conspiracy theories about Whites against Blacks. These theories range from the belief that the government promotes drug abuse in Black communities to the belief that HIV is a manmade weapon of racial warfare. An open and honest discussion of the Tuskegee Syphilis Study can facilitate the process of rebuilding trust between the Black community and public health authorities. This dialogue can contribute to the development of HIV education programs that are scientifically sound, culturally sensitive, and ethnically acceptable.