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Exploring the "legacy" of the Tuskegee Syphilis Study: a follow-up study from the Tuskegee Legacy Project

Katz, Ralph V; Green, B Lee; Kressin, Nancy R; James, Sherman A; Wang, Min Qi; Claudio, Cristina; Russell, Stephanie Luise
The purpose of this follow-up 2003 3-City Tuskegee Legacy Project (TLP) Study was to validate or refute our prior findings from the 1999-2000 4 City TLP Study, which found no evidence to support the widely acknowledged 'legacy' of the Tuskegee Syphilis Study (TSS), ie, that blacks are reluctant to participate in biomedical studies due to their knowledge of the TSS. The TLP Questionnaire was administered in this random-digit-dial telephone survey to a stratified random sample of 1162 black, white, and Puerto Rican Hispanic adults in 3 different US cities. The findings from this current 3-City TLP Study fail to support the widely acknowledged 'legacy' of the TSS, as awareness of the TSS was not statistically associated with the willingness to participate in biomedical studies. These findings, being in complete agreement with our previous findings from our 1999-2000 4-City TLP, validate those prior findings
PMCID:2745634
PMID: 19378637
ISSN: 0027-9684
CID: 154686

The legacy of the Tuskegee Syphilis Study: assessing its impact on willingness to participate in biomedical studies

Katz, Ralph V; Green, B Lee; Kressin, Nancy R; Kegeles, S Stephen; Wang, Min Qi; James, Sherman A; Russell, Stefanie L; Claudio, Cristina; McCallum, Jan M
The phrase, 'legacy of the Tuskegee Syphilis Study', is sometimes used to denote the belief that Blacks are more reluctant than Whites to participate in biomedical research studies because of the infamous study of syphilis in men run by the U.S. Public Health Service from 1932-72. This paper is the first to attempt to assess directly the accuracy of this belief within a multi-city, multi-racial, large-scale, detailed random survey. We administered the Tuskegee Legacy Project (TLP) Questionnaire to 826 Blacks and non-Hispanic White adults in three U.S. cities. While Blacks had higher levels of general awareness of the Tuskegee Syphilis Study, there was no association between either awareness or detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, either for Blacks or Whites observed in our survey. While this study refutes the notion that there is a direct connection between detailed knowledge of the Tuskegee Syphilis Study and willingness to participate in biomedical research, it does not assess the broader question of whether and how historical events influence people's willingness to participate in research. Future studies should explore this
PMCID:2702151
PMID: 19029744
ISSN: 1049-2089
CID: 153632

Participation in biomedical research studies and cancer screenings: perceptions of risks to minorities compared with whites

Katz, Ralph V; Wang, Min Qi; Green, B Lee; Kressin, Nancy R; Claudio, Cristina; Russell, Stefanie Luise; Sommervil, Christelle
BACKGROUND: This analysis was conducted to determine whether there is a difference among blacks, Hispanics, and whites in their perception of risks associated with participating in either a biomedical study or a cancer screening. METHODS: The Tuskegee Legacy Project Questionnaire, which focused on research subject participation, was administered in two different surveys (1999-2000 and 2003) in seven cities. The Cancer Screening Questionnaire was administered in 2003 in three cities. RESULTS: The study sample across the three surveys consisted of 1,064 blacks, 781 Hispanics, and 1,598 non-Hispanic whites. Response rates ranged from 44% to 70% by city. Logistic regression analyses, adjusted for age, sex, education, income, and city, revealed that blacks and Hispanics each self-reported that minorities, compared with whites, are more likely to be 'taken advantage of' in biomedical studies and much less likely to get a 'thorough and careful examination' in a cancer screening (odds ratios ranged from 3.6 to 14.2). CONCLUSIONS: Blacks and Hispanics perceive equally high levels of risk for participating in cancer screening examinations and for volunteering to become research subjects in biomedical studies. This perception provides a strong message about the need to overtly address this critical health disparities issue
PMCID:2702154
PMID: 18813202
ISSN: 1073-2748
CID: 155069

Willingness to participate in cancer screenings: blacks vs whites vs Puerto Rican Hispanics

Katz, Ralph V; Claudio, Cristina; Kressin, Nancy R; Green, B Lee; Wang, Min Qi; Russell, Stefanie Luise
BACKGROUND: In the United States, blacks and Hispanics have lower cancer screening rates than whites have. Studies on the screening behaviors of minorities are increasing, but few focus on the factors that contribute to this discrepancy. This study presents the self-reported willingness by blacks, Puerto Rican Hispanics, and non-Hispanic whites to participate in cancer screenings in differing cancer screening situations. METHODS: The Cancer Screening Questionnaire (CSQ), a 60-item questionnaire, was administered via random-digit-dial telephone interviews to adults in three cities: Baltimore, Maryland; New York, New York; and, San Juan, Puerto Rico. RESULTS: The 1,148 participants in the CSQ study sample consisted of 355 blacks, 311 Puerto Rican Hispanics, and 482 non-Hispanic whites. Response rates ranged from 45% to 58% by city. Multivariable logistic regression analyses revealed that blacks and Puerto Ricans were often more likely (OR 2.0-3.0) and never less likely than whites to self-report willingness to participate in cancer screenings regardless of who conducted the cancer screening, what one was asked to do in the cancer screening, or what type of cancer was involved (with the exception of skin cancer where blacks, compared with whites, had an OR of 0.5). CONCLUSIONS: The findings from this study provide evidence that blacks and Hispanics self-report that they are either as willing or more willing than whites to participate in cancer screening programs
PMCID:2702240
PMID: 18813201
ISSN: 1073-2748
CID: 155070

Exploring potential pathways between parity and tooth loss among American women

Russell, Stefanie L; Ickovics, Jeannette R; Yaffee, Robert A
OBJECTIVES: We assessed the impact of parity on tooth loss among American women and examined mediators of this relationship. METHODS: The study sample comprised 2635 White and Black non-Hispanic women who had taken part in the third National Health and Nutrition Examination Survey. We examined the relationship between parity and tooth loss, by age and by socioeconomic position, and tested a theoretical model focusing on direct and indirect influences of parity on dental disease. Robust regression techniques were used to generate path coefficients. RESULTS: Although parity was associated with tooth loss, the relationship was not moderated through dental care, psychosocial factors, or dental health-damaging behaviors. CONCLUSIONS: Parity is related to tooth loss among American women, but the mechanisms of the association remain undefined. Further investigation is warranted to determine whether disparities in dental health among women who have been pregnant are caused by differences in parity or to physiological and societal changes (e.g., factors related to pregnant women's access to care) paralleling reproductive choices
PMCID:2424105
PMID: 18511717
ISSN: 0090-0036
CID: 155071

Awareness of the Tuskegee Syphilis Study and the US presidential apology and their influence on minority participation in biomedical research

Katz, Ralph V; Kegeles, S Stephen; Kressin, Nancy R; Green, B Lee; James, Sherman A; Wang, Min Qi; Russell, Stefanie L; Claudio, Cristina
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. METHODS: 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
PMCID:2377291
PMID: 17901437
ISSN: 0090-0036
CID: 153127

Pregnancy and oral health: a review and recommendations to reduce gaps in practice and research

Russell, Stefanie L; Mayberry, Linda J
This article presents a review of the research relevant to oral health during pregnancy and includes nursing practice recommendations for referral of women to a dentist for safe and effective dental care during pregnancy. In recent years, research linking periodontitis to the risk for adverse birth outcomes has resulted in increased interest in the topic of oral health during pregnancy. The achievement of optimal oral health in pregnant women as its own benefit, however, has in the past been hampered by myths surrounding the safety of dental care during pregnancy. Many women also lack access to dental care and dental insurance, which interferes with their ability to receive adequate oral care during pregnancy. Intraoral changes that occur with pregnancy because of hormonal changes, combined with lack of routine exams and delays in treatment for oral disease, place pregnant women at higher risk for dental infections
PMID: 18158525
ISSN: 0361-929x
CID: 153139

AIDS consiracy theory, race/ethnicity, and participation in biomedical research [Meeting Abstract]

Russell, SL; Lee, RS
ORIGINAL:0009029
ISSN: 0022-0345
CID: 1044562

Willingness of minorities to participate in biomedical studies: confirmatory findings from a follow-up study using the Tuskegee Legacy Project Questionnaire

Katz, Ralph V; Green, B Lee; Kressin, Nancy R; Claudio, Cristina; Wang, Min Qi; Russell, Stefanie L
OBJECTIVES: The purposes of this analysis were to compare the self-reported willingness of blacks, Puerto-Rican Hispanics and whites to participate as research subjects in biomedical studies, and to determine the reliability of the Tuskegee Legacy Project Questionnaire (TLP). METHODS: The TLP Questionnaire, initially used in a four-city study in 1999-2000, was administered in a follow-up study within a random-digit-dial telephone survey to a stratified random sample of adults in three different U.S. cities: Baltimore, MD; New York City; and San Juan, PR. The questionnaire, a 60-item instrument, contains two validated scales: the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale. RESULTS: Adjusting for age, sex, education, income and city, the LOP Scale was not statistically significantly different for the racial/ethnic groups (ANCOVA, p=87). The GPFF Scale was statistically significantly higher for blacks and Hispanics as compared to whites (adjusted ANCOVA, p<0.001). CONCLUSIONS: The of the findings from the current three-city study, as well as from our prior four-city study, are remarkably similar and reinforce the conclusion that blacks and Hispanics self-report that, despite having a higher fear of participation, they are just as likely as whites to participate in biomedical research
PMCID:2139897
PMID: 17913117
ISSN: 0027-9684
CID: 152963

Participation in cancer screenings: Perceived risks for Blacks and Puerto-Rican Hispanics vs Whites in the US [Meeting Abstract]

Katz, R; Claudio, C; Green, BL; Kressin, N; Wang, MQ; Russell, S
ISI:000247310300203
ISSN: 1368-8375
CID: 154371