Belief in AIDS origin conspiracy theory and willingness to participate in biomedical research studies: findings in whites, blacks, and Hispanics in seven cities across two surveys.

PURPOSE: The purpose of this study was to determine whether a belief in the AIDS origin conspiracy theory is related to likelihood or fear of participation in research studies. METHODS: The Tuskegee Legacy Project Questionnaire was administered via random-digit-dialed telephone interview to black, white, and Hispanic participants in 4 cities in 1999 and 2000 (n = 1,133) and in 3 cities in 2003 (n = 1,162). RESULTS: In 1999, 27.8% of blacks, 23.6% of Hispanics, and 8% of whites (P ≤ .001) reported that it was "very or somewhat likely" that AIDS is "the result of a government plan to intentionally kill a certain group of people by genocide." In 2003, 34.1% of blacks, 21.9% of Hispanics, and 8.4% of whites (P ≤ .001) reported the same. CONCLUSIONS: Whereas blacks and Hispanics were more than 3 times more likely than whites to believe in this AIDS origin conspiracy theory, holding this belief was not associated with a decreased likelihood of participation in, or increased fear of participation in, biomedical research.

Self-reported willingness to have cancer screening and the effects of sociodemographic factors.

BACKGROUND: The relative effects of race/ethnicity and other sociodemographic factors, compared to those of attitudes and beliefs on willingness to have cancer screening, are not well understood. METHODS: We conducted telephone interviews with 1148 adults (22% Hispanic, 31% African American, and 46% white) [corrected] from 3 cities in mainland United States and Puerto Rico. Respondents reported their sociodemographic characteristics, attitudes about barriers and facilitators of cancer screening, and willingness to have cancer screening under 4 scenarios: when done in the community vs one's doctor's office, and whether or not one had symptoms. RESULTS: Racial/ethnic minority status, age, and lower income were frequently associated with increased willingness to have cancer screening, even after including attitudes and beliefs about screening. Having screening nearby was important for community screening, and anticipation of embarrassment from screening for when there were no cancer symptoms. Associations varied across 4 screening scenarios, with the fewest predictors for screening by one's doctor when there were symptoms. CONCLUSIONS: Sociodemographic characteristics not only were related to willingness to have cancer screenings in almost all cases, but were generally much stronger factors than attitudinal barriers and facilitators. Cancer screening campaigns should affect attitudinal change where possible, but should also recognize that targeting screening to specific population groups may be necessary.

Identifying the Tuskegee Syphilis Study: implications of results from recall and recognition questions.

BACKGROUND: This analysis assessed whether Blacks, Whites and Puerto-Rican (PR) Hispanics differed in their ability to identify the Tuskegee Syphilis Study (TSS) via open-ended questions following lead-in recognition and recall questions. METHODS: The Tuskegee Legacy Project (TLP) Questionnaire was administered via a Random-Digit Dial (RDD) telephone survey to a stratified random sample of Black, White and PR Hispanic adults in three U.S. cities. RESULTS: The TLP Questionnaire was administered to 1,162 adults (356 African-Americans, 313 PR Hispanics, and 493 non-Hispanic Whites) in San Juan, PR, Baltimore, MD and New York City, NY. Recall question data revealed: 1) that 89% or more of Blacks, Whites, and PR Hispanics were not able to name or definitely identify the Tuskegee Syphilis Study by giving study attributes; and, 2) that Blacks were the most likely to provide an open-ended answer that identified the Tuskegee Syphilis Study as compared to Whites and PR Hispanics (11.5% vs 6.3% vs 2.9%, respectively) (p

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

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.

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

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.

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

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.

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

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.

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

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.

Cancer screening participation: comparative willingness of San Juan Puerto Ricans versus New York City Puerto Ricans.

OBJECTIVES: The specific aim of this study was to determine the self-reported likelihood of New York Puerto Ricans (NYPR) and San Juan Puerto Ricans (SJPR) to participate in: 10 site-specific cancer screenings, cancer-screenings conducted by different specific persons/agencies and cancer-screening under specific conditions of what one was asked to do as a part of cancer screening. METHODS: The Cancer Screening Questionnaire (CSQ) was administered via random-digit-dial telephone interviews to 154 adults living in San Juan, PR and 155 in New York, NY. RESULTS: Although the self-reported willingness to participate across the 10 site-specific cancer screening exams was consistently high in both cities, SJPR had higher rates, as compared to NYPR for all 10 site-specific cancer screening exams in the unadjusted analyses. A similar pattern was observed regarding the influence of both "who conducts the cancer-screening exam" and "what one is asked to do in a cancer-screening exam" as factors in the willingness to participate in such exams. Adjusted multivariate analysis showed that the odds of SJPR participating in skin cancer screening as compared to NYPR, were three-fold higher to participate in skin cancer screening and were two-fold higher to participate in a cancer screening where they have to be interviewed about their alcohol habits. These two observed differences might reflect the effect of acculturation in the NYPR.

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

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.

The Tuskegee Legacy Project: willingness of minorities to participate in biomedical research.

The broad goal of the Tuskegee Legacy Project (TLP) study was to address, and understand, a range of issues related to the recruitment and retention of Blacks and other minorities in biomedical research studies. The specific aim of this analysis was to compare the self-reported willingness of Blacks, Hispanics, and Whites to participate as research subjects in biomedical studies, as measured by the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale. The Tuskegee Legacy Project Questionnaire, a 60 item instrument, was administered to 1,133 adult Blacks, Hispanics, and non-Hispanic Whites in 4 U.S. cities. The findings revealed no difference in self-reported willingness to participate in biomedical research, as measured by the LOP Scale, between Blacks, Hispanics, and Whites, despite Blacks being 1.8 times as likely as Whites to have a higher fear of participation in biomedical research on the GPFF Scale.

The Tuskegee Legacy Project: history, preliminary scientific findings, and unanticipated societal benefits.

This 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. Futhermore, 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. 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 NIH-funded research center.

Beliefs of women's risk as research subjects: a four-city study examining differences by sex and by race/ethnicity.

BACKGROUND: Given the history of vulnerability of women of childbearing age to medical treatments that have caused injury, for example, diethylstilbestrol (DES) and thalidomide, it is surprising that, to date, little research has directly examined attitudes of the general public regarding the vulnerability of women when they participate in biomedical research studies. METHODS: We asked three questions about beliefs of women as biomedical research subjects of 623 white, 353 black, and 157 Hispanic people in four U.S. cities: (1) Do you believe that women are more likely to be "taken advantage of" when they become subjects in a medical research project as compared to men? (2) Do you believe that women of childbearing age (15-45-year-olds) should become study participants in medical research projects? and, if the response was no or don't know/not sure, (3) Would you still say no or don't know/not sure to question 2 even if it meant that we would not know anything about the health and medical treatments for women aged 15-45 years? RESULTS: Overall, women were 60% more likely than men to state that women were more likely than men to be "taken advantage of," even when controlling for potential confounders, and both black and Hispanic participants were much more likely than white participants to state that this was the case. The majority of respondents (57.4%) said that women of childbearing age should not be research subjects; among women, both black and Hispanic people were less likely than white people to change their minds when prompted that this might mean that "nothing would be known about the health and medical treatments for women aged 15-45 years." CONCLUSIONS: A substantial proportion of the participants reported knowledge of historical events, and this knowledge was related, particularly in black participants, to attitudes toward vulnerability of women as biomedical research subjects.