Unraveling the Tuskegee Study of Untreated Syphilis

White, Robert M.

doi:10.1001/archinte.160.5.585

Cited by 87 publications

(49 citation statements)

References 49 publications

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“…The notorious Tuskegee, Alabama United States Public Health Service research scandal may be an example of negative historical influence on trust in the medical system. 36,37 More research is needed to test this hypothesis and to more fully explore how views toward testing reflect larger social processes. Having a correct understanding of which hypothetical test was offered influenced willingness to accept a genotypic but not phenotypic test.…”

Section: Resultsmentioning

confidence: 99%

Patient acceptability of genotypic testing for hemochromatosis in primary care

Anderson

Press

Tucker

et al. 2005

Genetics in Medicine

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Purpose: Genetic screening can enable timely detection and treatment of hereditary hemochromatosis (HH). Little is known about patient acceptability of DNA testing as compared to conventional phenotypic testing. Methods:Within the HEIRS Study, a large primary-care screening study of HH and iron overload, we randomly assigned participants to receive brief information on either HH genotypic or phenotypic testing, and assessed the willingness to accept this test. The study was designed to recruit an equal number of African Americans and Caucasians.Results: A total of 2500 participants were recruited from waiting rooms of primary care practices; 2165 participants who self-identified as African Americans and Caucasians were included in the analyses. Overall, 56% had accepted a genotypic test versus 58% for a phenotypic test. Adjusting for Field Center (FC), age, gender, race, educational attainment, global health rating, and knowledge of the test, the odds ratio of accepting a genotypic versus phenotypic test was 0.85 (95% CI: 0.71, 1.02; P ϭ 0.078). Characteristics associated with test acceptance were age 45-64 years, female gender, Caucasian race, self-rated health less than ''very good'', and knowledge of the test. Test acceptance was associated with interest in knowing more about health (81%) and in helping family members (71%). Refusal reasons included a need to talk with a doctor (44%), concern about privacy (32%), and dislike of blood drawing (29%). Conclusion: In this diverse sample of primary care patients, stated acceptance of genotypic testing for HH mutations was similar to phenotypic testing for blood iron. Patient education regarding the nature of test, importance of disease detection, and privacy protection appear to be essential for achieving high rates of screening participation. Genet Med 2005:7(8):557-563.

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Section: Resultsmentioning

confidence: 99%

Patient acceptability of genotypic testing for hemochromatosis in primary care

Anderson

Press

Tucker

et al. 2005

Genetics in Medicine

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“…A particular issue in health disparities research is lack of trust that has evolved in health care because of unethical treatment of disenfranchised minority populations. The Tuskegee Study of Untreated Syphilis, 59 the Henrietta Lacks case, 60 and the diabetes studies of the Pima Indians 61 are examples that have created mistrust in US health care and scientific institutions. Mistrust of the health care system by entire population groups has led to an increased emphasis by researchers on community engagement and participation in health disparities research.…”

Section: Developing Trust In the Systemmentioning

confidence: 99%

Big Data Science: Opportunities and Challenges to Address Minority Health and Health Disparities in the 21st Century

Zhang

Pérez‐Stable²,

Bourne³

et al. 2017

Ethn Dis

152

138

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Addressing minority health and health disparities has been a missing piece of the puzzle in Big Data science. This article focuses on three priority opportunities that Big Data science may offer to the reduction of health and health care disparities. One opportunity is to incorporate standardized information on demographic and social determinants in electronic health records in order to target ways to improve quality of care for the most disadvantaged populations over time. A second opportunity is to enhance public health surveillance by linking geographical variables and social determinants of health for geographically defined populations to clinical data and health outcomes. Third and most importantly, Big Data science may lead to a better understanding of the etiology of health disparities and understanding of minority health in order to guide intervention development. However, the promise of Big Data needs to be considered in light of significant challenges that threaten to widen health disparities. Care must be taken to incorporate diverse populations to realize the potential benefits. Specific recommendations include investing in data collection on small sample populations, building a diverse workforce pipeline for data science, actively seeking to reduce digital divides, developing novel ways to assure digital data privacy for small populations, and promoting widespread data sharing to benefit under-resourced minority-serving institutions and minority researchers. With deliberate efforts, Big Data presents a dramatic opportunity for reducing health disparities but without active engagement, it risks further widening them.Ethn.Dis;2017;27(2):95-106; doi:10.18865/ed.27.2.95.

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“…The legacy of the Tuskegee study of untreated syphilis [30], provider disrespect, prejudices, stereotyping, and treatment inequities were some of the reasons for mistrust of the healthcare system offered by African-American focus group participants. Lack of cultural competence, especially language congruency as well as the paucity of Hispanic providers were cited by the Hispanic men.…”

Section: Discussionmentioning

confidence: 99%

Identification of barriers to healthcare access for underserved men in Denver

Whitley¹,

Samuels²,

Wright³

et al. 2005

The Journal of Men's Health & Gender

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Background: Poor minority men experience significant disparities in health status in the United States. Disparities in health status are aggravated by decreased access to healthcare services. Denver Health Men's Health Initiative conducted quantitative and qualitative studies to learn about healthcare use and barriers to healthcare access experienced by underserved men of color in Denver. Methods: A preliminary survey was conducted with a convenience sample of 243 poor men of color in community locations to learn about insurance status and health services use. Additionally, six focus groups were completed to discover attitudes and beliefs about healthcare access among underserved Hispanic and African-American men. Results: Financial barriers, particularly the lack of health insurance coverage, are the paramount concerns of underserved men of color. Many non-financial barriers to healthcare access were also identified, including racism, communication difficulties, fear, and beliefs about manhood. Conclusions: The accessibility of appropriate, affordable healthcare is vital to improving health outcomes and reducing health disparities. The findings are useful in identifying and reducing barriers to healthcare access for underserved men of color and to inform policy makers about men's health issues.

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Unraveling the Tuskegee Study of Untreated Syphilis

Cited by 87 publications

References 49 publications

Patient acceptability of genotypic testing for hemochromatosis in primary care

Patient acceptability of genotypic testing for hemochromatosis in primary care

Big Data Science: Opportunities and Challenges to Address Minority Health and Health Disparities in the 21st Century

Identification of barriers to healthcare access for underserved men in Denver

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