To develop a survey, the Bioethicai Issues in Biostatistical Consulting Questionnaire, for investigating bioethical issues in analysis, a comprehensive literature review was conducted to specify areas of bioethics. Through a focus group study and the evaluation by 10 biostatisticians, the questionnaire was constructed. Validation must involve a panel of experts. Now, test-retest reliability and factor analysis should be conducted on a group of eligible subjects.
Health literacy experts and the American Medical Association have developed recommended communication techniques for healthcare providers given that effective communication has been shown to greatly improve health outcomes. The purpose of this study was to determine the number and types of communication techniques routinely used by Maryland physicians.
In 2010, a 30-item survey was mailed to a random sample of 1,472 Maryland family physicians and pediatricians, with 294 surveys being returned and usable. The survey contained questions about provider and practice characteristics, and 17 items related to communication techniques, including seven basic communication techniques. Physicians’ use of recommended communication techniques was analyzed using descriptive statistics, analysis of variance, and ordinary least squares regression.
Family physicians routinely used an average of 6.6 of the 17 total techniques and 3.3 of the seven basic techniques, whereas pediatricians routinely used 6.4 and 3.2 techniques, respectively. The use of simple language was the only technique that nearly all physicians routinely utilized (Family physicians, 91%; Pediatricians, 93%). Physicians who had taken a communications course used significantly more techniques than those who had not. Physicians with a low percentage of patients on Medicaid were significantly less likely to use the recommended communication techniques compared to those providers who had high proportion of their patient population on Medicaid.
Overall, the use of recommended communication techniques was low. Additionally, many physicians were unsure of the effectiveness of several of the recommended techniques, which could suggest that physicians are unaware of valuable skills that could enhance their communication. The findings of this study suggest that communications training should be given a higher priority in the medical training process in the United States.
Hepatitis B Virus (HBV) disproportionately affects new immigrants from endemic regions such as China. Untreated infections increase health risks for liver diseases including cancer. Yet most of those infected are unaware of their disease limiting prevention and early treatment options. The purpose of this community based study was to evaluate a heuristic model identifying factors contributing to Hepatitis B (HBV) screening among Chinese Americans.
A cross-sectional design included a sample of 924 Chinese men and women 18 years of age and older of which 718 had complete data for final analysis. Confirmatory factor analysis verified conceptual indicators including access/satisfaction with health care and enabling, predisposing, cultural, and health belief factors. Structural equation modeling was used to identify direct and indirect predictors of Hepatitis B screening.
Bivariate analysis revealed that Chinese respondents who were never screened for HBV were significantly more likely to be below age 40 (69.8%), male (69.2%), had less than a high school education (76.4%), with less than 6 years living in the US (72.8%) and had no health insurance (79.2%). The final model identified enabling factors (having health insurance, a primary health care provider to go to when sick and more frequent visits to a doctor in the last year) as the strongest predictor of HBV screening (coefficient = 0.470, t = 7.618, p < .001). Predisposing factors (education variables) were also significantly related to HBV screening. Cultural factors and Satisfaction with Health care were associated with HBV screening only through their significant relationships with enabling factors.
The tested theoretical model shows promise in predicting HBV testing among Chinese Americans. Increasing access to health care by expanding insurance options and improving culturally sensitivity in health systems are critical to reach new immigrants like Chinese for HBV screening. Yet such strategies are consistent with DHHS Action plan for the Prevention and Treatment of Viral Hepatitis. Implementing community-based strategies like partnering with relevant Community-Based Organizations are important for meeting HBV policy targets.
Electronic supplementary material
The online version of this article (doi:10.1186/s12879-015-0854-7) contains supplementary material, which is available to authorized users.
HBV; Hepatitis B; HBV screening; Chinese; Health care access
Minority populations are underrepresented in fields of science, perhaps limiting scientific perspectives. Informed by recent studies using Social Cognitive Career Theory, this study examined whether three conceptual constructs: self-efficacy, perceived adult support, and perceptions of barriers, as well as several discrete and immutable variables, were associated with intent to pursue college science education in a sample (N = 134) of minority youth (70.1% female and 67.2% African American). A paper-and-pencil survey about pursuit of college science was administered to 10th graders with a B- or better grade point average from six high schools in an underserved community. Results indicated that the three conceptual constructs were bivariate correlates of intent to pursue college science education. Only perceived adult support and knowing whether a parent received college education were significant predictors in multivariate modeling. These results build on previous research and provide further insight into youth decision-making regarding pursuit of college science.
minority; youth; self-efficacy; adult support; college education; science
The purpose of this study was to validate a Sociocultural Health Behavior Model using a structural equation analysis to determine the direction and magnitude of the interdependence of model components in relation to health behavior associated with colorectal cancer (CRC) screening among Chinese Americans.
A cross-sectional design included a sample of 311 Chinese American men and women age 50 and older. The initial step involved use of confirmatory factor analysis which included the following variables: access/satisfaction with health care, enabling, predisposing, cultural, and health belief factors. Structural equation modeling analyses were conducted on factors for CRC screening.
Education and health insurance status were significantly related to CRC screening. Those with less than a high school education and without health insurance were more likely to be “never screened” for CRC than those having more education and health insurance. The path analysis findings also lend support for components of the Sociocultural Health Belief Model and indicated that there was a positive and significant relationship between CRC screening and the enabling factors, between cultural factors and predisposing, enabling, and access/satisfaction with health care factors and between enabling factors and access/satisfaction with health care.
The model highlights the significance that sociocultural factors play in relation to CRC screening and reinforced the need to assist Chinese with poor English proficiency in translation and awareness of the importance of CRC screening. The use of community organizations may play a role in assisting Chinese to enhance colorectal cancer screening rates.
Colorectal cancer; Cancer screening; Chinese Americans; Sociocultural health behavior model; Structural equation modeling
Measures are needed to assess youth perceptions about health science careers to facilitate research aimed at facilitating youth pursuit of health science. Although the Indiana Instrument provides an established measure of perceptions regarding nursing and ideal careers, we were interested in learning how high achieving 10th graders from relatively low socioeconomic areas who identify as Black/African American (Black) perceive health science and ideal careers. The Indiana Instrument was modified, administered to 90 youth of interest, and psychometrically analyzed. Reliable subscales were identified that may facilitate parsimonious, theoretical, and reliable study of youth decision-making regarding health science careers. Such research may help to develop and evaluate strategies for increasing the number of minority health scientists.
Community-based approaches have been increasing in the effort to raise awareness and early detection for cancer and other chronic disease. However, many times, such interventions are tested in randomized trials, become evidence-based, and then fail to reach further use in the community. Project HEAL (Health through Early Awareness and Learning) is an implementation trial that aims to compare two strategies of implementing evidence-based cancer communication interventions in African American faith-based organizations.
This article describes the community-engaged process of transforming three evidence-based cancer communication interventions into a coherent, branded strategy for training community health advisors with two delivery mechanisms. Peer community health advisors receive training through either a traditional classroom approach (with high technical assistance/support) or a web-based training portal (with low technical assistance/support).
We describe the process, outline the intervention components, report on the pilot test, and conclude with lessons learned from each of these phases. Though the pilot phase showed feasibility, it resulted in modifications to data collection protocols and team and community member roles and expectations.
Project HEAL offers a promising strategy to implement evidence-based interventions in community settings through the use of technology. There could be wider implications for chronic disease prevention and control.
Implementation; Dissemination; Evidence-based; Faith-based; African American; Cancer; Health communication; Technology
Only 10% of health professionals are from racial/ethnic minority groups, and much research has been focused on encouraging minorities to enter a health career. The lack of health workforce diversity has many implications for the effective delivery of care to an increasingly diverse US population. The goal of this analysis is to examine the influence of personal health experiences on interest in a health career. “Personal Health Experiences” is a newly created scaled variable that assesses the influence of direct and indirect health experiences of respondents. In a sample of 134 predominantly minority 10th graders from underprivileged neighborhoods, the scale had adequate psychometric properties (range = 1 to 7; mean = 4.44, s.d. = 1.46, median=4.60, Cronbach's alpha = 0.72), and multivariate regression modeling revealed that “Personal Health Experiences” predicted increased “Interest in Health Careers" (B=0.47, s.e.=0.10). Future research is needed to determine the role that personal health experiences play in career choices and one's success in health career decisions. Such information could, for example, help to refine health profession recruitment strategies.
Asian Americans experience disproportionate incidence and mortality rates of certain cancers, compared to other racial/ethnic groups. Primary care physicians are a critical source for cancer screening recommendations and play a significant role in increasing cancer screening of their patients. This study assessed primary care physicians’ perceptions of cancer risk in Asians and screening recommendation practices. Primary care physicians practicing in New Jersey and New York City (n=100) completed a 30-question survey on medical practice characteristics, Asian patient communication, cancer screening guidelines, and Asian cancer risk. Liver cancer and stomach cancer were perceived as higher cancer risks among Asian Americans than among the general population, and breast and prostate cancer were perceived as lower risks. Physicians are integral public health liaisons who can be both influential and resourceful toward educating Asian Americans about specific cancer awareness and screening information.
Asian Americans; cancer; primary care physician; health disparities
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.
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).
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.
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.
AIDS; biomedical research; conspiracy theory; health disparities; HIV; research participation
The purpose of this community-based study was to develop a structural equation model for factors contributing to breast cancer screening among Chinese American women.
A cross-sectional design included a sample of 440 Chinese American women aged 40 years and older. The initial step involved use of confirmatory factor analysis, which included the following variables: access/satisfaction with health care, enabling, predisposing, and cultural and health belief factors. Structural equation model analyses were conducted to evaluate factors related to breast cancer screening in Chinese American women.
Initial univariate analyses indicated that women without health insurance were significantly more likely to report being never-screened compared to women with health insurance. Structural equation modeling techniques were used to evaluate the utility of the Sociocultural Health Behavior model in understanding breast cancer screening among Chinese American women. Results indicated that enabling and predisposing factors were significantly and positively related to breast cancer screening. Cultural factors were significantly associated with enabling factors and satisfaction with healthcare. Overall, the proposed model explained 34% of the variance in breast cancer screening among Chinese American women.
The model highlights the significance of enabling and predisposing factors in understanding breast cancer screening behaviors among Chinese American women. In addition, cultural factors were associated with enabling factors, reinforcing the importance of providing translation assistance to Chinese women with poor English fluency and increasing awareness of the critical role of breast cancer screening. Partnering with community organizations may help to facilitate and enhance the screening rates.
Mammograms; Breast cancer screening; Chinese women
The purpose of this community-based study was to develop a structural equation model for factors contributing to cervical cancer screening among Chinese American women.
A cross-sectional design included a sample of 573 Chinese American women aged 18 years and older. The initial step involved use of confirmatory factor analysis, that included the following variables: access to and satisfaction with health care, and enabling and predisposing cultural and health beliefs. Structural equation model analyses were conducted on factors related to cervical cancer screening.
Age, marital status, employment, household income, and having health insurance, but not educational level, were significantly related to cervical screening status. Predisposing and enabling factors were positively associated with cervical cancer screening. The cultural factor was significantly related to the enabling factor or the satisfaction with health care factor.
This model highlights the significance of sociocultural factors in relation to cervical cancer screening. These factors were significant, with cultural, predisposing, enabling, and health belief factors and access to and satisfaction with health care reinforcing the need to assist Chinese American women with poor English fluency in translation and awareness of the importance of cervical cancer screening. Community organizations may play a role in assisting Chinese American women, which could enhance cervical cancer screening rates.
Papanicolaou test; cervical cancer screening; Chinese women
The present study tested a mediational model of the role of religious involvement, spirituality, and physical/emotional functioning in a sample of African American men and women with cancer. Several mediators were proposed based on theory and previous research, including sense of meaning, positive and negative affect, and positive and negative religious coping. One hundred patients were recruited through oncologist offices, key community leaders and community organizations, and interviewed by telephone. Participants completed an established measure of religious involvement, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-SP-12 version 4), the Positive and Negative Affect Schedule (PANAS), the Meaning in Life Scale, the Brief RCOPE, and the SF-12, which assesses physical and emotional functioning. Positive affect completely mediated the relationship between religious behaviors and emotional functioning. Though several other constructs showed relationships with study variables, evidence of mediation was not supported. Mediational models were not significant for the physical functioning outcome, nor were there significant main effects of religious involvement or spirituality for this outcome. Implications for cancer survivorship interventions are discussed.
Religion; Spirituality; Cancer coping; Mechanisms; Mediation; African Americans
The purpose of this community-based participatory study was to identify factors associated with colorectal cancer (CRC) screening compliance and non-compliance among Cambodians, Vietnamese, Koreans and Chinese men and women 50 years and older living in the United States. A cross-sectional design was used in the study. The completed sample included 815 Asian Americans which included Cambodians (N=215), Vietnamese (N=195), Koreans (N=94) and Chinese (N=311). A 95-item questionnaire was developed and pilot tested for content validity and reliability. An in-person data collection approach was utilized and participants were given choice in responding in English or their native language. Of the 815 participants, 79.1% (N=645) reported never-screened, 7.9% (N=64), non-compliance, and 13.0% (N=106) compliance. Education was significantly associated with never-screened for CRC for Vietnamese and Chinese; employment status for Cambodians and Koreans; lack of health insurance for Cambodians, Korean and Chinese; English fluency and years lived in the U.S. for Vietnamese, Koreans, and Chinese. Less acculturated Asian Americans were more likely to be never screened, but differentially across ethnic subgroups. Barriers to screening included lack of knowledge, language, transportation, and time. Increased culturally-targeted public awareness and education programs are needed to improve CRC screening and compliance among high risk Asian American ethnic subgroups.
sigmoidoscopy or colonoscopy; fecal occult blood test; Vietnamese; Korean; Chinese; Cambodian; correlates of colorectal cancer screening
To test the Sociocultural Health Behavior Model in relation to the health behavior of prostate cancer (PCa) screening among Chinese American men.
Confirmatory factor analysis and structural equation model analyses were conducted among Chinese American men.
The path analysis supported the components of the sociocultural model and indicated a positive and significant relationship between PCa screening and the enabling factors; between cultural factors and predisposing, enabling, and access/satisfaction with health care factors; and between enabling factors and access/satisfaction with health care.
The model highlights the significance that sociocultural factors play in relation to PCa screening.
digital rectal exam; prostate specific antigen (PSA) blood test; prostate cancer screening; structural equation model
Informatics applications have the potential to improve participation in clinical trials, but their design must be based on user-centered research. This research used a fully counterbalanced experimental design to investigate the effect of changes made to the original version of a website, http://BreastCancerTrials.org/, and confirm that the revised version addressed and reinforced patients' needs and expectations.
Participants included women who had received a breast cancer diagnosis within the last 5 years (N=77). They were randomized into two groups: one group used and reviewed the original version first followed by the redesigned version, and the other group used and reviewed them in reverse order.
The study used both quantitative and qualitative measures. During use, participants' click paths and general reactions were observed. After use, participants were asked to answer survey items and open-ended questions to indicate their reactions and which version they preferred and met their needs and expectations better.
Overall, the revised version of the site was preferred and perceived to be clearer, easier to navigate, more trustworthy and credible, and more private and safe overall. However, users who viewed the original version last had similar attitudes toward both versions.
By applying research findings to the redesign of a website for clinical trial searching, it was possible to re-engineer the interface to better support patients' decisions to participate in clinical trials. The mechanisms of action in this case appeared to revolve around creating an environment that supported a sense of personal control and decisional autonomy.
Clinical trials; breast neoplasms; user-computer interface; user-centered design; human–computer interaction; quantitative research
This report explores the level of detailed knowledge about the Tuskegee Syphilis Study (TSS) among 848 Blacks and Whites in three U.S. cities across an array of demographic variables. The Tuskegee Legacy Project (TLP) Questionnaire was used, which was designed to explore the willingness of minorities to participate in biomedical studies. A component of the TLP Questionnaire, the TSS Facts & Myths Quiz, consisting of seven yes/no factual questions, was used to establish respondents’ level of detailed knowledge on the TSS. Both Blacks and Whites had similar very low mean quiz score on the 7-point scale, with Blacks’ scores being slightly higher than Whites (1.2 vs. 0.9, p = .003). When analyzing the level of knowledge between racial groups by various demographic variables, several patterns emerged: (a) higher education levels were associated with higher levels of detailed knowledge and (b) for both Blacks and Whites, 30 to 59 years old knew the most about TSS compared with younger and older adult age groups. The findings show that much of the information that circulates in the Black and White communities about the TSS is false, often minimizing or understating the most egregious injustices that occurred. Health promotion and educational implications of these findings are offered and conclude that the findings should be used as a catalyst to explore local realities and sentiments regarding participation in biomedical research within the research philosophy and framework of community-based participatory research.
Tuskegee Syphilis Study; detailed knowledge between racial groups; community-based participatory research; African American; biomedical research; minorities; Blacks; health promotion
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.
We conducted telephone interviews with 1148 adults (31% African American, 27% Puerto Rican American, 43% white) 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.
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.
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.
cancer screening; knowledge, attitudes, and beliefs; minority health
To examine the influence of sex and race on the effects of strength training (ST) on thigh muscle volume (MV), midthigh subcutaneous fat (SCF), and intermuscular fat (IMF).
One hundred eighty-one previously inactive healthy Caucasian (N = 117) and African American (N = 54) men (N = 82) and women (N = 99), aged 50–85 yr, underwent about 10 wk of unilateral knee extension ST. Ten subjects were neither Caucasian nor African American and were, therefore, not included in the race analysis. Quadriceps MV and midthigh SCF and IMF cross-sectional area were measured with computed tomography before and after ST. Sex and race comparisons were made with a 2 × 2 (sex by race) analysis of covariance.
Training-induced increases in absolute MV were significantly greater (P < 0.001) in men than in women, though both sex groups increased MV significantly with ST (P < 0.001), and the relative (%) increases were similar. There were significant increases in MV within race groups (P < 0.001), but no significant differences between races. There were no significant changes in SCF or IMF, whether sex and racial groups were separated or combined. In addition, there was no sex by race interaction for changes in MV, SCF, or IMF with ST.
Strength training does not alter subcutaneous or intermuscular fat, regardless of sex or racial differences. Although men exhibit a greater muscle hypertrophic response to strength training than do women, the difference is small. Race does not influence this response.
RESISTANCE TRAINING; MUSCLE VOLUME; SUBCUTANEOUS FAT; INTERMUSCULAR FAT; REGIONAL BODY COMPOSITION
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.
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?
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.”
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.
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.
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.
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.
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).
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.
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.
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.
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).
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.
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.
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.
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).
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 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.
Legacy of the Tuskegee Syphilis Study; minority participation in research; bioethics; health disparities