Objectives-We compared the influence of awareness of the Tuskegee Syphilis Study and the presidential apology for that study on the willingness of Blacks, non-Hispanic Whites, and Hispanics to participate in biomedical research.Requests for reprints should be sent to Ralph V. Katz, DMD, MPH, PhD, Professor and Chair, Department of Epidemiology & Health Promotion, NYU College of Dentistry, 345 E 24th St, MC-9416, New York, NY 10010 (e-mail: ralph.katz@nyu.edu). Contributors R. V. Katz originated and directed the study, led the development of the Tuskegee Legacy Project Questionnaire and the data analysis, wrote the initial draft of the article, and led the team's crafting of the final article. S. S. Kegeles, N. R. Kressin, S. A. James, and B. L. Green developed the Tuskegee Legacy Project Questionnaire, assisted with the writing of the grants that supported this research, helped plan the data analysis and data interpretation, and contributed to the writing of the final article. M. Q. Wang and S. L. Russell conducted the statistical analyses, helped to plan and finalize the data interpretation and contributed to the writing of the final article. C. Claudio helped plan the data analysis and data interpretation, and contributed to the writing of the final article. NIH Public Access Author ManuscriptAm J Public Health. Author manuscript; available in PMC 2009 August 24. NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptMethods-The Tuskegee Legacy Project Questionnaire was administered to 1133 adults in 4 US cities. This 60-item questionnaire addressed issues related to the recruitment of minorities into biomedical studies.Results-Adjusted multivariate analysis showed that, compared with Whites, Blacks were nearly 4 times as likely to have heard of the Tuskegee Syphilis Study, more than twice as likely to have correctly named Clinton as the president who made the apology, and 2 to 3 times more likely to have been willing to participate in biomedical studies despite having heard about the Tuskegee Syphilis Study (odds ratio [OR]=2.9; 95% confidence interval [CI]=1.4, 6.2) or the presidential apology (OR=2.3; 95% CI=1.4, 3.9).Conclusions-These marked differences likely reflect the cultural reality in the Black community, which has been accustomed to increased risks in many activities. For Whites, this type of information may have been more shocking and at odds with their expectations and, thus, led to a stronger negative impact.The US Public Health Service Tuskegee Syphilis Study is arguably the most infamous biomedical research study in US history. [1][2][3][4][5] This study enrolled 399 Black sharecroppers in Macon County, Ala, and studied the effects of not treating their syphilis. 6,7 There is widespread belief that the "legacy" of this unethical study is that the Black community has a greater reluctance to participate in clinical research studies because of the abuses foisted on the participants in that study. Although a considerable amount has been written about the long-lasting e...
SummaryThis article is intended to provide a relatively complete picture of how a pilot study-conceived and initiated within an NIDCR-funded RRCMOH-matured into a solid line of investigation within that center and "with legs"into a fully funded study within the next generation of NIDCR centers on this topic of health disparities, the Centers for Research to Reduce Oral Health Disparities. It highlights the natural opportunity that these centers provide for multicenter, cross-disciplinary research and for research career pipelining for college and dental school students; with a focus, in this case, on minority students.Furthermore, this series of events demonstrates the rich potential that these types of research centers have to contribute in ways that far exceed the scientific outcomes that form their core. In this instance, the NMOHRC played a central-and critical, if unanticipated-role in contributing to two events of national significance, namely the presidential apology to the African American community for the research abuses of the USPHS-Tuskegee syphilis study and the establishment of the National Center for Bioethics in Research and Health Care at Tuskegee University. Origins of the Tuskegee Legacy ProjectThe Tuskegee Legacy Project (TLP) has its origins in casual Web surfing by a biomedical reference librarian on her laptop computer on a fall evening in 1993 while relaxing in the dormer room, which served as the family den. Ms. B.J. Frey, Head Reference Librarian at the * Corresponding author. E-mail address: ralph.katz@nyu.edu (R.V. Katz).This research project was supported by NIDCR/NIH grant #P50 DE10592 (University of Medicine and Dentistry of New Jersey/ University of Connecticut Northeastern Minority Oral Health Research Center), and is currently supported in the analysis phase by NIDCR/NIH grant #U54 DE 14257 (NYU Oral Cancer RAAHP Center).Research Centers supported by the NIH are fully intended to create a vortex of scientific activity that goes well beyond the direct scientific aims of the studies initially funded within those centers. The maxim is that the whole should be greater than the sum of its initial constituent studies or parts. We believe that NMOHRC did indeed achieve that maxim-even extending "the whole" to include broad societal impact, well beyond the scope of important, but mere, scientific outcomes-all within the concept and appropriate functions of a scientific NIHfunded research center. NIH Public Access
Changing emphases in programs of social welfare, including public health, make it increasingly necessary to plan and conduct programs responsive to the subjective needs and values of the consumer groups for whom they are intended. Obtaining information about such needs in turn requires the development of inexpensive but valid tools for collecting data.In recent years the telephone has seen increasing use as a means of collecting data quickly and inexpensively. Despite some limitations, a small number of published studies generally support the usefulness of the telephone as a means of obtaining personal information. Unfortunately, most of these studies have focused on a relatively small geographic area, where the cost of telephoning is minimal and where it is feasible to undertake intensive efforts to reduce nonresponse rates. The present report is one of the very few which attempted to obtain personal information via the telephone from a probability sample of the U. S. adult population. It also provides detailed data on the costs of this method, and on nonresponse rates, and estimates possible sample bias stemming from differences in personal characteristics of telephone owners and nonowners. The results of an effort to reduce bias are also described. Finally, since the sample interviewed by telephone had earlier given personal interviews, data are provided on the consistency of information obtained by the two methods. THE STUDY SETTING
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Only a very small proportion of the population sees dentists frequently on a regular basis. By reviewing a group of studies, the author of this paper endeavors to determine what is currently known about the factors that determine whether or not dental care is sought. Future research needs are spelled out.
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