This special issue addresses the legacy of the United States Public Health Service Syphilis Study on health reform, particularly the Affordable Care Act (ACA). The 12 manuscripts cover the history and current practices of ethical abuses affecting American Indians, Latinos, Asian Americans and African Americans in the United States and in one case, internationally. Commentaries and essays include the voice of a daughter of one of the study participants in which we learn of the stigma and maltreatment some of the families experienced and how the study has impacted generations within the families. Consideration is given in one essay to utilizing narrative storytelling with the families to help promote healing.
This article provides the reader a roadmap to the themes that emerged from the collection of articles. These themes include population versus individual consent issues, need for better government oversight in research and health care, the need for overhauling our bioethics training to develop a population level, culturally driven approach to research bioethics. The articles challenge and inform us that some of our assumptions about how the consent process best works to protect racial/ethnic minorities may be merely assumptions and not proven facts. Articles challenge the belief that low participation rates seen in biomedical studies have resulted from the legacy of the USPHS Syphilis Study rather than a confluence of factors rooted in racism, bias and negative treatment. Articles in this special issue challenge the “cultural paranoia” of mistrust and provide insights into how the distrust may serve to lengthen rather than shorten the lives of racial/ethnic minorities who have been used as guinea pigs on more than one occasion. We hope that the guidance offered on the importance of developing a new framework to bioethics can be integrated into the foundation of health care reform.
Tuskegee; research bioethics; survivors
Previous research has not systematically examined the relationship of perceived race-based discriminations to labor force participation or job related stresses–problems experienced by Black women. The present study investigated the relative contributions of perceived race-based discriminations and sociodemographic characteristics to employment status and job stress in a national probability sample (the National Survey of Black Americans; J. S. Jackson, 1991) of Black women in the United States. Logit and polychotomous logistic regression analyses revealed that Black women’s current employment status was best explained by sociodemographic measures. In contrast, the combination of perceived discrimination and sociodemographics differentially affects patterns of employment status and perceived job stress in the work environment of Black women. Implications of these findings for the health of African American women are discussed.
This exploratory study examined the use of two components (small and large groups) of a community-based intervention, the Focused Support Group (FSG) model, to alleviate employment-related stressors in Black women. Participants were assigned to small groups based on occupational status. Groups met for five weekly 3-hr sessions in didactic or small- and large-group formats. Two evaluations following the didactic session and the small and large group sessions elicited information on satisfaction with each of the formats, self-reported change in stress, awareness of interpersonal and sociopolitical issues affecting Black women in the labor force, assessing support networks, and usefulness of specific discussion topics to stress reduction. Results indicated the usefulness of the small- and large-group formats in reduction of self-reported stress and increases in personal and professional sources of support. Discussions on race and sex discrimination in the workplace were effective in overall stress reduction. The study highlights labor force participation as a potential source of stress for Black women, and supports the development of culture- and gender-appropriate community interventions as viable and cost-effective methods for stress reduction.
Black women; work; stress; discrimination
Existing models of attitude-behavior relationships, including the Health Belief Model, the Theory of Reasoned Action, and the Self-Efficacy Theory, are increasingly being used by psychologists to predict human immunodeficiency virus (HIV)-related risk behaviors. The authors briefly highlight some of the difficulties that might arise in applying these models to predicting the risk behaviors of African Americans. These social psychological models tend to emphasize the importance of individualistic, direct control of behavioral choices and deemphasize factors, such as racism and poverty, particularly relevant to that segment of the African American population most at risk for HIV infection. Applications of these models without taking into account the unique issues associated with behavioral choices within the African American community may fail to capture the relevant determinants of risk behaviors.
In 1997 President William Clinton issued an apology to the living male survivors of the U.S. Public Health Syphilis Study at Tuskegee. While the apology became the focus for many, little attention has been paid going forward to two very important recommendations by President Clinton that accompanied the apology. President Clinton pointed out that it is through the remembering of the shameful past of the Syphilis Study at Tuskegee that we can build a better present and a better future for the nation. Second, President Clinton directed the Secretary of Health and Human Services to work in partnership with higher education to prepare training materials for medical researchers as well as postgraduate fellowships to train bioethicists to build on core ethical principles of respect for individuals, justice, and informed consent, and how to use these principles effectively in racial/ethnic minority populations, especially African Americans. This article examines bioethical research challenges left in the wake of the U.S. Public Health Syphilis Study at Tuskegee and the presidential apology. This manuscript raises for consideration the inclusion of these issues in health care reform and the implementation of the Affordable Care Act. It asks: What is the right or good thing to do? What are our obligations to one another? Two challenges are examined: 1) Conducting research with African Americans without knowledge of bioethics specific to this population; and 2) The ethical dilemma of conducting research that does not adequately take into account the diversity within the Black population that is a contributing factor in health disparities. Training and policy recommendations responsive to President Clinton’s Apology are presented.
Tuskegee; presidential apology; affordable care act; population health ethics; research ethics training
Psychological science offers a variety of methods to both understand and intervene when acts of potential racial or ethnic racism, bias or prejudice occur. The Trayvon Martin killing is a reminder of how vulnerable African American men and boys, especially young African American men, are to becoming victims of social inequities in our society. We examine several historical events of racial bias (the Los Angeles civil disturbance after the Rodney King verdict, the federal government’s launch of a “War on Drugs” and the killing of Trayvon Martin) to illustrate the ways in which behaviors of racism and race-based discrimination can be viewed from a psychological science lens in the hopes of eliminating and preventing these behaviors. If society is to help end the genocide of African American men and boys then we must broaden our focus from simply understanding instances of victimization to a larger concern with determining how policies, laws, and societal norms serve as the foundation for maintaining implicit biases that are at the root of race-based discrimination, prejudice, bias and inequity. In our call to action, we highlight the contributions that psychologists, particularly racial and ethnic minority professionals, can make to reduce the negative impact of racial and ethnic bias through their volunteer/pro bono clinical efforts.
prejudice; discrimination; bias; African Americans; men; Rodney King; War on Drugs
Most surveys of the prevalence of psychiatric disorders among lesbians and gay men find no increased risk in comparison with heterosexuals. However, the majority of this work has relied on convenience samples drawn from the visible lesbian and gay community. The authors examined differences in 1-year prevalence of six psychiatric syndromes among sexually active individuals in the 1996 National Household Survey of Drug Abuse who reported either exclusive heterosexuality (n = 9,714) or having any same-gender sex partners (n = 194) in the prior year. Although nearly three quarters of homosexually active individuals did not meet criteria for any of the six syndromes assessed, in multivariate logistic regression analyses, homosexually active men were more likely than other men to evidence major depression and panic attack syndromes. In contrast, homosexually active women were more likely than other women to be classified with alcohol or drug dependency syndromes. Both men and women reporting any same-gender sex partners were more likely than others to have used mental health services in the year prior to interview. These findings suggest a small increased risk among homosexually active populations in 1-year psychiatric morbidity and use of mental health care services.
health surveys; homosexuality; mental disorders; psychiatry; substance-related disorders
Two decades of HIV prevention efforts with men who have sex with men (MSM) have not eliminated the risk of new HIV infections in this vulnerable population. Indeed, current incidence rates in African American MSM are similar to those usually only seen in developing countries. A review of the existing literature suggests that the prevention research agenda for Black MSM could benefit from reframing conceptualization of risk as a function of individual properties to a broad consideration of social and interpersonal determinants. Studies that investigate dyadic and social-level influences on African American MSM’s relationships are needed. This includes research explicating the diversity existing within the categorizations of Black MSM with respect to perceived identity (gay, bisexual, “men on the down low,” “homo thugz”), constructions of masculinity, sexual scripts, sources of social support, and perceived norms and expectations. Recommendations are proposed for a research agenda focusing on linkages between interpersonal and social-structural determinants of HIV risk.
down low; MSM; African American; Black; homo thugz; HIV prevention; social determinants; inequality; mental health
Emerging methods in the measurement of race and ethnicity have important implications for the field of public health. Traditionally, information on race and/or ethnicity has been integral to our understanding of the health issues affecting the U.S. population. We review some of the complexities created by new classification approaches made possible by the inclusion of multiple-race assessment in the U.S. Census and large health surveys. We discuss the importance of these classification decisions in understanding racial/ethnic health and health care access disparities. The trend toward increasing racial and ethnic diversity in the United States will put further pressure on the public health industry to develop consistent and useful approaches to racial/ethnic classifications.
classification bias; public health statistics; cultural competence
HIV/AIDS surveillance data are critical for monitoring epidemic trends, but can mask dynamic sub-epidemics, especially in vulnerable populations that under-utilize HIV testing. In this case study, we describe community-based epidemiologic data among injection drug users (IDU) and female sex workers (FSWs) in two northern Mexico-US Border States that identified an emerging HIV epidemic and generated a policy response.
We draw from quantitative and qualitative cross-sectional and prospective epidemiologic studies and behavioral intervention studies among IDUs and FSWs in Tijuana, Baja California and Ciudad Juarez, Chihuahua.
Recognition that the HIV epidemic on Mexico’s northern border was already well established in subgroups where it had been presumed to be insignificant was met with calls for action and enhanced prevention efforts from researchers, NGOs and policy makers.
Successful policies and program outcomes included expansion of needle exchange programs, a nation-wide mobile HIV prevention program targeting marginalized populations, a successful funding bid from the Global Fund for HIV, TB and Malaria to scale up targeted HIV prevention programs and the establishment of binational training programs on prevention of HIV and substance use. We discuss how epidemiologic data informed HIV prevention policies and suggest how other countries may learn from Mexico’s experience.
HIV; AIDS; surveillance; policy; Mexico; US border; epidemiology; injection drug use; sex work
One underutilized method for reducing health disparities and training culturally competent health care workers is the engagement of undergraduate student health organizations in conducting health screenings, promotion, and health education outreach activities in in underserved racial/ethnic communities. We conducted a needs assessment of 14 predominantly racial/ethnic minority undergraduate student-run health organizations. The 14 organizations annually served approximately 12,425 people (67% Hispanic, 25% African American, 6.33% Asian Pacific Islander), predominantly at health fairs within Los Angeles County (averaging 138 attendees). Student organizations provided screenings on general health conditions and diseases, with less emphasis on behavioral risk factors (e.g., drinking, smoking). Organizations indicated a need for increased and affordable trainings in preventive health screenings and help in understanding target populations’ needs. Universities are in an excellent position to train, supervise, and organize volunteer health corps in order to engage students in reducing health disparities and to train culturally competent health care providers.
health disparities; civic engagement; health fairs; medical education; screenings; racial/ethnic minorities; prevention; volunteerism; health corps
Inequities in marriage laws and domestic partnership benefits may have implications for who bears the burden of health care costs. We examined a recent period in California to illuminate disparities in health insurance coverage faced by same-sex couples. Partnered gay men are less than half as likely (42 percent) as married heterosexual men to get employer-sponsored dependent coverage, and partnered lesbians have an even slimmer chance (28 percent) of getting dependent coverage compared to married heterosexual women. As a result of these much lower rates of employer-provided coverage, partnered lesbians and gay men are more than twice as likely to be uninsured as married heterosexuals. The exclusion of gay men and women from civil marriage and the failure of domestic partnership benefits to provide insurance parity contribute to unequal access to health coverage, with the probable result that more health spending is pushed onto these individuals and onto the public.
Despite strong indications of elevated risk of suicidal behavior in lesbian, gay, bisexual, and transgender people, limited attention has been given to research, interventions or suicide prevention programs targeting these populations. This article is a culmination of a three-year effort by an expert panel to address the need for better understanding of suicidal behavior and suicide risk in sexual minority populations, and stimulate the development of needed prevention strategies, interventions and policy changes. This article summarizes existing research findings, and makes recommendations for addressing knowledge gaps and applying current knowledge to relevant areas of suicide prevention practice.
LGBT; risk factors; suicide; suicide attempts; suicide prevention
The elimination of racial/ethnic health status disparities is a compelling national health objective. It was etched in sharp relief by the 1985 report of the U.S. Department of Health and Human Services Secretary’s Task Force on Black and Minority Health and considerable attention has been devoted to the problem since that report. But the problem persists, disparities are not fully explained and effective policies to reduce them have been elusive, a situation presenting both opportunities and challenges. Important advances towards reducing racial/ethnic health disparities may be made by better understanding the complex bidirectional relationship between and among the multiple factors, biological and non-biological, influencing morbidity and mortality. The landscape in which these influences are felt is anything but static. In this paper selected components of the landscape that are critical to the elimination of racial/ethnic health status disparities are reviewed. These factors underscore the importance of adopting and maintaining a perspective on health disparities that encompasses a broad array of health determinants.
Disparities; racial groups; ethnic groups; minority groups; environment; globalization; socioeconomic status; health literacy; health status
Using combined data from the population-based 2001 and 2003 California Health Interview Surveys, we examined ethnic and gender-specific smoking behaviors and the effect of three acculturation indicators on cigarette smoking behavior and quitting status among 8,192 Chinese, Filipino, South Asian, Japanese, Korean, and Vietnamese American men and women. After adjustment for potential confounders, current smoking prevalence was higher and the quit rate was lower for Korean, Filipino, and Vietnamese American men compared with Chinese American men. Women’s current smoking prevalence was lower than men’s in all six Asian American subgroups. South Asian and Korean American women reported lower quit rates than women from other ethnic subgroups. Asian American men who reported using only English at home had lower current smoking prevalence and higher quit rates, except for Filipino and South Asian American men. Asian American women who reported using only English at home had higher current smoking prevalence except for Japanese women. Being a second or later generation immigrant was associated with lower smoking prevalence among all Asian American subgroups of men. Less educated men and women had higher smoking prevalence and lower quit rates. In conclusion, both current smoking prevalence and quit rates vary distinctively across gender and ethnic subgroups among Asian Americans in California. Acculturation appears to increase the risk of cigarette smoking for Asian American women. Future tobacco-control programs should target at high-risk Asian American subgroups, defined by ethnicity, acculturation status, and gender.
Lesbians and bisexual women are more likely than other women to evidence a unique mix of common breast cancer risk factors. It is not known if this results in greater breast cancer mortality risk. We investigate possible sexual orientation-related differences in risk for fatal breast cancer in a large representative U.S. sample of married and cohabiting women.
Between 1997 and 2003, the National Health Interview Survey (NHIS) interviewed married or cohabiting female participants, aged 18–80 years inclusively, who reported either a male (n=136,174) or female (n=693) coresidential relationship partner. These records are linked to the National Death Index to provide information on mortality status as of December 31, 2006. Employing these data, we estimated the age-adjusted relative risk (RR) and its 95% confidence interval (CI) for mortality attributed to breast cancer using a Cox proportional hazard model.
Women in same-sex couples, compared to women in different-sex relationships, had greater age-adjusted risk for fatal breast cancer (RR=3.2, CI 1.01-10.21) but did not differ in their overall risk for mortality.
Our findings provide tentative support that sexual orientation is differentially linked to risk of fatal breast cancer. These findings underscore the need to investigate further breast cancer morbidity and mortality risk among women with minority sexual orientation.
We propose a model of symbolic social communication to explain the process whereby sociocultural identity mediates relationships among receivers, sources and messages to shape message effects. This exploratory study examines how two at-risk groups of African American men responded to various HIV prevention messages delivered by celebrity and professional sources. We interviewed 47 men from a homeless shelter and 50 male college students. Members of both groups were likely to select Johnson as the best person to deliver HIV prevention messages among a list of African American celebrity and professional sources. Results suggest the symbolic meanings embedded in celebrities and message topics are important and enduring influences on message effects. The images and ideas that a source represents are transferred to the advocated behavior, attitude or knowledge change and thus shape how messages are interpreted and received. Further understanding of how culture influences the effects of persuasive messages is critical for the improvement of health-communication campaigns.
celebrities; communication; HIV/AIDS; media; source credibility
Although early surveys of psychological adjustment among gay men and lesbians suggest only minor and not clinically relevant differences from heterosexual populations, concerns about psychiatric morbidity associated with HIV infection have renewed interest in the prevalence of psychological distress in this population, particularly among gay men. These later studies have focused primarily on white men. However, research indicates higher crude prevalence rates of psychological distress in community-drawn samples of African American subjects than in white subjects and also higher rates in women than in men. The authors examined rates of depressive distress and suicidal thoughts among homosexually active African American men and women who might be especially at risk for psychiatric morbidity due to multiple stigmatized social statuses.
Two nationally recruited groups of homosexually active African Americans (829 men and 603 women) completed self-administered questionnaires, including the Center for Epidemiologic Studies Depression Scale.
Homosexually active black women were as distressed as HIV-infected gay black men. Men with symptomatic HIV disease were significantly more distressed than men who were HIV infected but asymptomatic, HIV-antibody negative, or whose HIV status was unknown. Both men and women reported distress levels in excess of those previously reported in studies of blacks or primarily white gay men.
Further research is needed to identify specific predictors of life stressors and lack of social support among homosexually active African Americans who appear to be at higher risk for depressive distress.
Knowledge of the US Public Health Syphilis Study at Tuskegee is sometime cited as a principal reason for the relatively low participation rates seen among racial/ethnic minorities, particularly African Americans, in biomedical research. However, only a few studies have actually explored this possibility. We use data from a random digit dial telephone survey of 510 African-Americans and 253 Latinos, age 18 to 45 years, to investigate associations between knowledge of the USPHS Syphilis Study at Tuskegee and endorsement of HIV/AIDS conspiracy theories. All respondents were drawn from an area of low-income, predominantly race-segregated inner city households in Los Angeles. Results indicate that African Americans were significantly more likely than Latinos to endorse HIV/AIDS conspiracy theories. Further, African Americans were more aware of the USPHS Syphilis Study at Tuskegee (SST). Nevertheless, 72% of African Americans and 94% of Latinos reported that they have never heard of the Syphilis Study at Tuskegee. Further, while awareness of the Syphilis Study at Tuskegee was a significant predictor of endorsing HIV/AIDS conspiracy theories, results suggest that other factors may be more important in accounting for low biomedical and behavioral study participation rates.
Although recent attention has focused on the likelihood that contemporary sexual minority youth (i.e., gay, lesbian, bisexual [GLB]) are “coming out” at younger ages, few studies have examined if early sexual orientation identity development is also present in older GLB cohorts. We analyze retrospective data on the timing of sexual orientation milestones in a sample of sexual minorities drawn from the California Quality of Life Surveys. Latent profile analysis of 1,260 GLB adults, ages 18-84 years identified three trajectories of development: Early (n = 951, milestones spanning ages 12 to 20), Middle (n = 239, milestones spanning ages 18 to 31), and Late (n = 70, milestones spanning ages 32 to 43). Motivated by previous research on variability in adolescent developmental trajectories, post-hoc analyses of the Early Profile group identified two sub-groups: Child-Onset (n = 284, milestones spanning ages 8 to 18), and Teen-Onset (n = 667, milestones spanning ages 14 to 22). Nearly all patterns of development were identity-centered, with average age of self-identification as GLB preceding average age of first same-sex sexual activity. Overall, younger participants and the majority of older participants were classified to the Early Profile, suggesting that early development is common regardless of age cohort. The additional gender differences observed in the onset and pace of sexual orientation identity development warrant future research.
Gay, Lesbian, Bisexual; Latent Profile Analysis; Gender; Sexual Orientation; Life Span, Life Course Research; Developmental Milestones
The development of measures of self-reported racial/ethnic discrimination is an active area of research, but few measures have been validated across multiple racial/ethnic and language groups. Our goal is to develop and evaluate a discrimination measure that is appropriate for use in surveys of racially and ethnically diverse populations.
To develop our measure, we employ a mixed-methods approach for survey research, drawing from both qualitative and quantitative traditions, including literature review, cognitive testing, psychometric analyses, behavior coding as well as two rounds of field testing using a split-sample design. We tested our new measure using two different approaches to elicit self-reported experiences of racial/ethnic discrimination.
Our new measure captures four dimensions of racial/ethnic discrimination: 1) frequency of encounters with discrimination across several domains (e.g., medical care, school, work, street and other public places); 2) timing of exposure (e.g., recent, lifetime); 3) appraisal of discrimination as stressful; and 4) responses to discrimination.
Because of the growing interest in measurement of racial/ethnic discrimination in health surveys, we think this report on the methods informing the development and testing of the discrimination module that will be used on the California Health Interview Survey would be useful to other researchers. The application of mixed methods to rigorously test the validity and reliability of our instrument proves to be a good roadmap for measuring racial/ethnic discrimination in multicultural and multilingual populations.
Cross-Cultural Comparison; Discrimination; Survey Methods
Women with minority sexual orientations (e.g., lesbian, bisexual) are more likely than heterosexual women to report histories of childhood maltreatment and attempted suicide; however, the importance of the timing of minority sexual orientation development in contributing to this increased risk is uncertain. This study investigated relationships between self-reported ages of achieving minority sexual orientation development milestones (first awareness of same-gender attractions, disclosure of a minority sexual orientation to another person, and same-gender sexual contact), and childhood maltreatment and suicide attempt experiences in a sample of 2,001 women recruited from multiple-community sources. Younger age of minority sexual orientation development milestones was positively linked to self-reported recall of childhood maltreatment experiences, and to a childhood suicide attempt. After adjusting for differences in maltreatment, the odds of suicide attempt attributable to younger age of sexual orientation development milestones was reduced by 50 to 65%, suggesting that maltreatment may account for about half of the elevated risk for childhood suicide attempts among women with early minority sexual orientation development. Implications for services, interventions, and further research to address maltreatment disparities for sexual minorities are discussed.
sexual orientation; suicide attempt; childhood maltreatment; victimization; racial/ethnic minority
Research has shown that some individuals with sexual minority status have a higher prevalence of psychiatric disorders (both mental health and substance use) and also tend to seek treatment at higher rates as compared with similar heterosexuals. Relationships among treatment need and treatment use, however, are not well understood. This paper examines the relationship of sexual orientation and gender to perceptions of need and unmet need for treatment among individuals with and without mental health or substance use disorders.
Data were obtained from a probability sample of California residents that oversampled for sexual minorities (unweighted N = 2,079). Bivariate analyses compared perceived treatment need and treatment use among groups defined by sexual orientation, gender, and presence of a mood, anxiety, or substance use disorder. Logistic regression models were fit predicting absence of treatment among those who perceived a need for it (unmet need), testing the interactive effects of gender, disorder, and sexual orientation and controlling for socio-demographics.
Sexual minority women had about half the odds of unmet need for treatment compared with other women, but there was no interaction between sexual minority status and unmet treatment need for men. Among individuals without any of the disorders measured, sexual minorities had lower odds of unmet need for treatment compared with others. Heterosexual men and women were most likely to have unmet treatment needs.
Sexual orientation and gender differentially influence treatment utilization, particularly among those who do not have a diagnosed disorder but perceive a need for treatment. Diagnostic criteria appear to be less relevant to understanding treatment use among sexual minorities.
mental health disorders; substance use disorders; sexual minority orientation; need for treatment; unmet treatment need
Racial/ethnic differences in mental health service use among adolescents in clinic and school settings for three high-need populations are examined. Results indicate no racial/ethnic differences in school-based use contrasted with significant differences in clinical settings. Schools may be critical avenues for reduction of unmet mental health need among racial/ethnic minorities.
Mental health services; adolescents; race/ethnicity; school; clinic; language; AAPI; Hispanic
We use two surveys to describe the demographic and attitudinal correlates of being in “Living Apart Together” (LAT), cohabiting, and marital relationships for heterosexuals, lesbians, and gay men. About one third of U.S. adults not married or cohabiting are in LAT relationships – these individuals would be classified as “single” in conventional studies that focus on co-residential unions. Gay men are somewhat more likely than heterosexual men to be in LAT relationships. For heterosexuals and lesbians, LAT relationships are more common among younger people. Heterosexuals in LAT unions are less likely to expect to marry their partners, but more likely to say that couples should be emotionally dependent than are cohabiters. Regardless of sexual orientation, people in LAT relationships perceive similar amounts of emotional support from partners, but less instrumental support than cohabiters perceive.