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African-Americans & HIV Study Participation: barriers to study participation for African-Americans
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Download the PDF here
Download the PDF here
from jules: 2 published studies are below in full-text (pdfs attached): "HIV-Infected African Americans are Willing to Participate in HIV Treatment Trials" from John Mellor's group at the University of Pittsburgh, this study found only 57% of African-Americans had ever been asked to participate in a trial but of those who were asked 86% agreed....[suggesting] effective communication by researchers may be lacking.....in the 2nd study published just this week found: "we observed that all racial/ethnic groups held HIV conspiracy beliefs to some degree, but a greater percentage of African Americans and Mexican Americans endorsed them than non-Hispanic whites. Endorsing such beliefs, however, did not appear to influence respondents' willingness to participate in an HIV vaccine study. In fact, African and Mexican Americans were more likely than whites to report willingness to participate in HIV research"
"In a sample of 200 HIV-infected African-American adults receiving medical care at the Pittsburgh AIDS Center for Treatment (a university-based ambulatory clinic), we assessed research participation rates and willingness to participate in future HIV treatment trials, trust in the medical profession, sociodemographic characteristics, attitudes, and concerns about HIV treatment trials..........Of 197 survey respondents, only 114 (57%) had ever been asked to participate in an HIV trial, 98 (86%) agreed. Eighty (82%) of those who agreed enrolled, 69 (86%) of whom completed a trial......Trust in the medical profession did not play a significant role; there were no statistically significant differences in levels of trust in any of the four analyses.......This study demonstrates that HIV-infected African Americans seeking medical care at a university-based clinic are likely to participate in HIV trials if asked. This study suggests that HIV-infected African Americans who seek medical care for their HIV infection should be asked to participate in HIV trials.......PACT is a university-affiliated clinic that provides comprehensive clinical and social services. Second, PACT employs an African-American peer advocate who addresses patients' concerns and complaints. Third, PACT employs a resident research coordinator who acts as a liaison between the clinic and the ACTU; familiar-face coordinators, who ask patients about research participation in an environment that caters to their medical and social needs, might positively influence research participation rates.......African Americans who seek medical care at a university-based clinic are less distrustful of the medical profession. Ninety percent of survey respondents indicated that their PACT physician provides considerable support in coping with their disease. El-Sadr and Capps4 have noted that African Americans' fear of exploitation in research and their distrust of researchers can be overcome if trust develops between the primary care provider and the patient.......We postulate several reasons for the finding that only 57% of respondents had ever been asked to participate in an HIV trial.......physicians and researchers may have preconceived notions that African Americans are likely to refuse to participate in research. Assuming that African Americans are not interested in research, clinicians may not raise the issue. A similar dynamic was found in studies of organ donation where health care providers perceiving black families were less willing to donate, were requested for organ donation less frequently.19
While organ donation and research participation are different topics with different emotional impact, it is consistent with the broader communication theory that suggests that a speaker's preconceptions influence interactions. For example, white researchers may be uneasy talking to African Americans about research assuming (incorrectly) that patients will react with anger or distrust given past abuses......medical researchers simply may not know how to effectively communicate with African Americans about research participation particularly in light of the history of research abuses on the African-American population......researchers may believe that African Americans may not be reliable research participants and thus may be reluctant to enroll them in research. For example, Shavers-Hornaday et al.20 report that researchers believe that it is more difficult to obtain African-American patients' compliance and that African Americans have higher attrition rates.....some researchers believe that they are more likely to encounter difficulties in contacting patients from minority populations or in financing effective recruitment efforts that target these populations.....it is also possible that some patients were not asked to participate simply because they were ineligible for ongoing trials. Ineligibility may be because of lack of requisite clinical diagnoses and ongoing risky behaviors"
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"In this cross-sectional study of 601 community-recruited individuals in the Chicago metropolitan area, we observed that all racial/ethnic groups held HIV conspiracy beliefs to some degree, but a greater percentage of African Americans and Mexican Americans endorsed them than non-Hispanic whites. Endorsing such beliefs, however, did not appear to influence respondents' willingness to participate in an HIV vaccine study. In fact, African and Mexican Americans were more likely than whites to report willingness to participate in HIV research, even after adjusting for income, health insurance and previous participation in research."
"........our study provides evidence that the medical profession and HIV research community are still failing to effectively communicate essential knowledge about HIV/AIDS, allowing the persistence of misperceptions and conspiracy beliefs about the government's role in HIV research and treatment........Our results support previous suggestions that the underrepresentation of minorities in medical research may reflect inadequate or inappropriately targeted recruitment efforts on the part of researchers, rather than low levels of willingness to participate on the part of minorities.
"Several potential explanations could account for these findings. Individuals' perception of the balance between risk of HIV and potential benefit of research participation may be a more important determinant of willingness to participate than institutional trust in health care or belief in conspiracy theories.
African and Mexican Americans who acknowledge that their racial/ethnic groups are at greater risk for HIV infection may feel stronger motivation to pursue a potentially beneficial HIV vaccine trial, despite suspicions that the government is withholding information or even has nefarious intentions regarding HIV. Alternatively, given that the more commonly endorsed conspiracy statements in our study involved beliefs about HIV transmission, minorities may be paradoxically more likely to volunteer for a vaccine trial because uncertainty about the facts related to HIV transmission causes a greater level of perceived risk. It is possible that the HIV conspiracy beliefs used in this study may be poorly reflective of institutional trust in health care. Rather than being a manifestation of institutional trust, agreement with the conspiracy statements may reflect idiosyncratic, culturally-specific sentiments that are commonly acknowledged, but do not influence behaviors in the same way as more internalized health-related beliefs."
Do conspiracy beliefs about HIV keep minorities from taking part in research? Wisconsin study says no.
by UW Hospitals and Clinics
August 27, 2013
http://www.themadisontimes.com
MADISON - Conspiracy theories about the origins of the human immunodeficiency virus (HIV) and the role of the government in the AIDS epidemic remain prevalent among racial and ethnic minorities, but a new UW-Madison study shows that despite those views, African Americans and Mexican Americans are much more willing than whites to participate in HIV vaccine research.
The study, published online Aug. 24 in the Journal of Internal General Medicine, was designed to measure institutional trust in health care among diverse populations and to investigate relationships among trust, race/ethnicity, HIV conspiracy beliefs and willingness to participate in medical research.
"While misinformation about HIV research and treatment continues to circulate, it may be less a barrier to minority recruitment into research than was originally thought," said Dr. Ryan Westergaard, assistant professor in the departments of medicine and population health sciences at the University of Wisconsin School of Medicine and Public Health. "Our study suggests that historically low levels of minority participation in medical research may be more a reflection of inadequate or inappropriately targeted recruitment efforts than a widespread endorsement of conspiracy theories and distrust in the medical establishment."
The cross-sectional study of 601 community-recruited individuals in the Chicago metropolitan area found that all racial and ethnic groups held HIV conspiracy beliefs to some degree, but a greater percentage of African-Americans (59 percent, n=201) and Mexican Americans (58.6%, n=195) endorsed them than non-Hispanic whites (38.9 percent, n=198). Endorsing such beliefs, however, did not appear to influence respondents' willingness to participate in an HIV vaccine study:
· 58 percent of African-Americans surveyed said they were willing to participate in HIV vaccine research, compared to 49 percent of Mexican-Americans and 38 percent of whites.
· 81 percent of Mexican-Americans surveyed said they already agreed to participate in a HIV study, compared to 70 percent of African-Americans and 51 percent of whites.
According to the Centers for Disease Control and Prevention, African-Americans and Hispanic/Latino Americans in 2009 made up 13 and 16 percent respectively of the general U.S. population but accounted for 43 and 19 percent of people living with HIV/AIDS. Westergaard says that because these minorities are disproportionately affected by the HIV epidemic, they may derive greater benefit from participation in HIV research.
"In order for prevention research to be appropriately representative of the at-risk population, researchers must recruit minorities in relatively high proportions," Westergaard says. "We hope these findings will illuminate a path forward, not only for increased participation in research, but also to help repair some of the distrust that still exists among some minorities."
Westergaard says future research should seek to understand the roots of these beliefs among all racial and ethnic groups and explain why these beliefs persist when scientific knowledge and the capacity to communicate health information to the public have reached unprecedented levels of sophistication.
Other researchers involved in the study include Dr. Mary Catherine Beach from Johns Hopkins University, Dr. Somnath Saha from Oregon Health and Sciences University, and Dr. Elizabeth Jacobs from UW School of Medicine and Public Health.
The study was funded by grants from the National Institutes of Health (1R21HD057473-01A1 and K23DA032306), the Wisconsin Partnership Program and the Health Innovation Program at the UW School of Medicine and Public Health.
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HIV-Infected African Americans are Willing to Participate in HIV Treatment Trials
Journal of General Internal Medicine
Published online January 26, 2007
Mandy Garber, MD, MPH, Msc1, Barbara H. Hanusa, PhD2,5, Galen E. Switzer, PhD2,4,5, John Mellors, MD3, and Robert M. Arnold, MD1
1Section of Palliative Care and Medical Ethics, Division of General Internal Medicine University of Pittsburgh Medical Center, MUH 932W, 200
Lothrop Street, Pittsburgh, PA 15213, USA; 2Department of Psychiatry, University of Pittsburgh Medical Center, Pittsburgh, PA, USA; 3Division of
Infectious Diseases University of Pittsburgh Medical Center, Pittsburgh, PA, USA; 4Veterans Health Administration, Pittsburgh, PA, USA; 5Division
of General Internal Medicine University of Pittsburgh Medical Center, MUH 932W, 200 Lothrop Street, Pittsburgh, PA 15213, USA.
Background
Despite the high prevalence rates of HIV infection in the African-American community, African Americans remain underrepresented in HIV treatment trials.
Objective
(1) To develop a questionnaire that measures attitudes and concerns about HIV treatment trials among HIV-infected African Americans at a university-based clinic. (2) To determine actual participation rates and willingness to participate in future HIV treatment trials among HIV-infected African Americans at a university-based clinic.
Design
Questionnaire development and cross-sectional survey.
Setting, Participants, and Measurements
In a sample of 200 HIV-infected African-American adults receiving medical care at the Pittsburgh AIDS Center for Treatment (a university-based ambulatory clinic), we assessed research participation rates and willingness to participate in future HIV treatment trials, trust in the medical profession, sociodemographic characteristics, attitudes, and concerns about HIV treatment trials.
Main Outcome Measures
Research participation rates and willingness to participate in future HIV treatment trials.
Results
Only 57% of survey respondents had ever been asked to participate in an HIV treatment trial but 86% of those asked said yes. Prior research participation was significantly related to willingness to participate in future HIV treatment trials (P = .001). Contrary to previous studies, neither trust/distrust in the medical profession nor beliefs about the dishonesty of researchers was associated with research participation rates or willingness to participate in future HIV treatment trials.
Conclusions
Having never been asked to participate in research is a major barrier to the participation of HIV-infected African Americans in HIV treatment trials. African Americans who seek medical care for HIV infection should be asked to participate in HIV treatment trials.
INTRODUCTION
In the United States, the HIV epidemic disproportionately affects the African-American population. In 2004, African Americans accounted for 49% of the estimated 42,524 AIDS cases diagnosed; this rate was 10 times that for whites.1 Despite these disproportionate numbers, African Americans remain underrepresented in HIV treatment trials.2-5 In a 1995 study, among 4,604 HIV-infected individuals, African Americans were significantly less likely to be in trials than all other races or ethnicities.6 As of October 1999, African Americans accounted for only 23% of the adults enrolled in HIV treatment trials.7 Recent data from the HIV Cost and Services Utilization Study confirmed that HIV-infected African Americans are less likely to have access to experimental treatment or to participate in research than whites.3
Numerous studies exploring the barriers to African Americans' participation in medical research concluded that compared to whites, African Americans are more distrustful of researchers and less willing to participate in research.8-10 However, a study comparing African Americans who participate
in research with those who do not showed that research participants had more positive perceptions of clinical research. 11 We believe that within-culture comparisons are critical for developing effective mechanisms to increase the recruitment and retention of African Americans in research.
Therefore, we developed a survey to compare the attitudes and characteristics of HIV-infected African Americans who have and have not participated in HIV trials. Given that previous studies document African Americans' distrust of research, we were particularly interested in whether research distrust influences participation rates in HIV trials.
RESULTS
All 228 (80% of all possible black clinic patients) HIV-infected black (African, African-American, and Caribbean-American) patients who presented to PACT from July to November 2003 were invited to join the study. Of those patients, 203 (89%) who were African Americans were recruited, 2 were ineligible because of dementia, and 1 declined. Of the 200 respondents, 3 failed to complete the TIMP scale; 197 respondents were included in all of the analyses. Subanalyses of the group of patients who required assistance with completing the survey was not done because of the relatively small number of patients5 in this group.
Figure 1 provides a breakdown of the subject flow and research participation rates among the respondents, illustrating the four comparison groups. Of 197 survey respondents, only 114 (57%) had ever been asked to participate in an HIV trial, 98 (86%) agreed. Eighty (82%) of those who agreed enrolled, 69 (86%) of whom completed a trial.
Table 1 shows the sociodemographic characteristics of the respondents. Fifty-six percent were in the 25-44 age category, 78% had known about their HIV infection for >2 years, and 61% had been registered at PACT for >2 years. The mean TIMP score was 3.44 (halfway between undecided and agree, or slightly positive trust). The observed coefficient alpha on the TIMP for our subjects was 0.73 (95% confidence interval [CI] 0.67-0.78).
In the regression analyses, after controlling for being registered at PACT for >2 years, those asked to participate in a trial were significantly more likely to be employed and less likely to be negative about research participation; those who enrolled were significantly more likely to receive social support from their spiritual leader and less likely to use marijuana. Table 2 lists unadjusted odds ratios (OR) from the bivariate analyses and adjusted OR from the multivariable analyses; only statistically significant variables from the bivariate analyses are reported.
Trust in the medical profession did not play a significant role; there were no statistically significant differences in levels of trust in any of the four analyses. Finally, we asked survey respondents about their willingness to participate in future HIV trials. Eighty-three percent of prior research participants would be willing to participate in future trials. Among all respondents, 67% were willing to participate in future trials, whereas 23% were uncertain and 10% were unwilling. The reasons for willingness to participate in future trials were to help find a cure for AIDS (86%), to help the HIV community (65%) and to obtain new and effective experimental HIV medication(47%). Reasons for unwillingness and uncertainty about participation were fear of adverse effects of medications (45%), concern about the general risks of research (24%), and time constraints (21%). We assigned those uncertain about future participation to the unwilling group; in multivariable analysis the only significant factor related to willingness to participate in future research was prior research participation (adjusted OR=.6; 95% CI 1.9-11). There was no statistically significant difference in levels of trust in the medical profession between those willing, unsure, and unwilling to participate in future HIV trials. (F2,194=1.15, P=.3) Only 13% of those unwilling or uncertain were concerned about the honesty of researchers.
DISCUSSION
Multiple studies document African Americans' low participation rates in HIV trials.3-6 However, when we surveyed HIV-infected
African-American patients receiving medical care at PACT (a university-based clinic), we found that only 57% had ever been asked to participate in an HIV trial. In fact, when asked, African Americans seemed very willing to participate in a trial. Thus, having never been asked was the major barrier to participation. Contrary to findings in previous studies, we found that neither distrust in the medical profession nor beliefs about dishonesty of researchers was significantly associated with actual participation rates or willingness to participate in future HIV trials.
These findings are consistent with recent publications that African Americans are willing to participate in research: A national study of veterans attending outpatient facilities reported no race differences in self-reported research participation. 17 Wendler et al.18 performed a systematic review of 20 health research studies that reported consent rates by race or ethnicity. They also found that when invited, African Americans were not less likely and occasionally were more likely to consent to research participation compared to non-Hispanic whites.
Although the bivariate analyses show that both having been diagnosed with HIV infection for >2 years and being a patient at PACT for >2 years were significantly associated with being asked to participate in a trial, the multivariable analyses revealed that having been a patient at PACT for >2 years was the significant determinant. After adjusting for being registered at PACT for >2 years, patients asked to participate in trials were less likely to be negative about research and less likely to believe that research participants must remain in a study until the protocol is completed. This suggests that public education about research may improve participation rates. We postulate several reasons for the finding that only 57% of respondents had ever been asked to participate in an HIV trial.
First, physicians and researchers may have preconceived notions that African Americans are likely to refuse to participate in research. Assuming that African Americans are not interested in research, clinicians may not raise the issue. A similar dynamic was found in studies of organ donation where health care providers perceiving black families were less willing to donate, were requested for organ donation less frequently.19
While organ donation and research participation are different topics with different emotional impact, it is consistent with the broader communication theory that suggests that a speaker's preconceptions influence interactions. For example, white researchers may be uneasy talking to African Americans about research assuming (incorrectly) that patients will react with anger or distrust given past abuses. The relationship between the health care practitioner's ethnicity and whether patients were asked to participate in trials could not be assessed in this
study because all of the practitioners at PACT are white. Further research into investigators' ethnicity, beliefs, and attitudes is needed. Second, medical researchers simply may not know how to effectively communicate with African Americans about research participation particularly in light of the history of research abuses on the African-American population.
Third, researchers may believe that African Americans may not be reliable research participants and thus may be reluctant to enroll them in research. For example, Shavers-Hornaday et al.20 report that researchers believe that it is more difficult to obtain African-American patients' compliance and that African Americans have higher attrition rates. Fourth, some researchers believe that they are more likely to encounter difficulties in contacting patients from minority populations or in financing effective recruitment efforts that target these populations.20-22 Fifth, it is also possible that some patients were not asked to participate simply because they were ineligible for ongoing trials. Ineligibility may be because of lack of requisite clinical diagnoses and ongoing risky behaviors. However, given that the general policy at PACT is to ask all patients if they are interested in research and then to determine eligibility, this is less likely to be a reason. Several reasons might explain our finding that 86% of African Americans asked to participate in HIV trials agreed to do so. First, it may be attributable to the unique clinical setting in which the survey was done. PACT is a university-affiliated clinic that provides comprehensive clinical and social services. Second, PACT employs an African-American peer advocate who addresses patients' concerns and complaints. Third, PACT employs a resident research coordinator who acts as a liaison between the clinic and the ACTU; familiar-face coordinators, who ask patients about research participation in an environment that caters to their medical and social needs, might positively influence research participation rates. A study of HIV-infected patients beginning HIV primary care at Boston City Hospital reported that when a research associate provided patients with information about the purpose, role, and availability of HIV clinical trials, and addressed their concerns about these trials, the overall rates of participation improved and there was no longer a significant difference between the rates of participation by whites and by people of color.23
Our study found that trust/distrust in the medical profession was not associated with research participation rates and willingness to participate in future trials. This is contrary to reports by Sengupta et al.7 that African Americans' distrust about research institutions was the strongest inverse predictor of willingness to participate in AIDS clinical trials. The reasons for our distinctive findings are not clear. It may be that HIV-infected African Americans who seek medical care at a university-based clinic are less distrustful of the medical profession. Ninety percent of survey respondents indicated that their PACT physician provides considerable support in coping with their disease. El-Sadr and Capps4 have noted that African Americans' fear of exploitation in research and their distrust of researchers can be overcome if trust develops between the primary care provider and the patient. Similarly, Kass et al.24 found in a survey of 1,900 research participants that the patients' trust in their physicians was instrumental in the participants' decision to enroll in a research study.
The major limitation of this study is that of selection bias. Because the study population is limited to African Americans at a single university-based clinic, the findings may not be generalizable to other clinical settings. Although the distinctiveness of some of our findings may also be due in part to the desire of survey participants to provide socially desirable responses to questions, we believe this effect is minimal in our study, not only because the questionnaire was anonymous but also because participants reported considerable amounts of alcohol and substance abuse. There is evidence to suggest that when individuals self-report extensive drug use, the information provided is likely to be valid.25 Future studies are needed to assess the beliefs of African Americans in other clinical settings. These studies should assess whether there is a relationship between the clinical services received, satisfaction with these services, and willingness to participate in research. Studies should also assess the relationship between how African Americans are asked about research and their willingness to participate in research.
CONCLUSION
This study demonstrates that HIV-infected African Americans seeking medical care at a university-based clinic are likely to participate in HIV trials if asked. This study suggests that HIV-infected African Americans who seek medical care for their HIV infection should be asked to participate in HIV trials.
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Journal of General Internal Medicine
Racial/Ethnic Differences in Trust in Health Care: HIV Conspiracy Beliefs and Vaccine Research Participation
August 2013
ABSTRACT
BACKGROUND
Prior research has documented a high prevalence of conspiracy beliefs about the origin of the human immunodeficiency virus (HIV) and the role of the government in the acquired immunodeficiency syndrome (AIDS) epidemic, particularly among racial and ethnic minorities in the United States. Whether such beliefs are a barrier to participation in HIV prevention research is not known.
OBJECTIVE
To understand the prevalence of HIV conspiracy beliefs and their relationship to willingness to participate in HIV vaccine research among three racial/ethnic groups.
DESIGN
Cross-sectional survey.
PARTICIPANTS
Six hundred and one community-recruited volunteers (33.0 % White, 32.5 % Mexican American, and 34.5 % African American).
MAIN MEASURES
We evaluated the level of agreement with six previously described HIV conspiracy beliefs, trust in medical research, and willingness to participate in HIV vaccine research. Multivariate models were used to compare these parameters among the three racial/ethnic groups while controlling for the potential confounding effects of socioeconomic status, access to health care, and other demographic factors.
RESULTS
African Americans, Mexican Americans, and whites had similar levels of distrust in medical research. African and Mexican Americans were more likely to endorse one or more of six HIV conspiracy beliefs than whites (59.0 % and 58.6 % versus 38.9 %, respectively, P < 0.001), but were significantly more willing to participate in HIV vaccine research (ORs 1.58, CI 1.10-2.25 and 2.53, CI 1.75-3.66, respectively). Among respondents of all racial/ethnic groups, endorsing HIV conspiracy beliefs was not associated with willingness to participate in research.
CONCLUSIONS
HIV conspiracy beliefs, while common among all racial and ethnic groups in the United States, do not preclude willingness to participate in HIV prevention research.
BACKGROUND
Substantial racial/ethnic disparities in human immunodeficiency virus (HIV) infection persist in the United States. In 2009, African Americans and Hispanic/Latino Americans comprised 13%and 16%of the general U.S. population, but accounted for 43 % and 19 % of people living with HIV/acquired immunodeficiency syndrome (AIDS), respectively.1-3 Racial and ethnic disparities are even more pronounced among older Americans,4 women,5 and men who have sex with men (MSM).6,7 In addition to having disproportionately high prevalence, recent analyses have also suggested that among individuals receiving HIV care, African American patients are less likely to be retained in care8,9 and to achieve viral suppression in response to antiretroviral therapy.10-12 Because they are disproportionately affected by the HIV epidemic, African Americans may derive greater benefit from participation in HIV research. Moreover, for clinical or prevention research to be appropriately representative of the at risk population, investigators must recruit African American participants in relatively high proportions. However, African Americans have been traditionally underrepresented in HIV research.13,14
Greater distrust of health care and medical research among minority populations reflects the legacy of exploitation of minorities in research exemplified by the Tuskegee Syphilis Study,15,16 and has been commonly cited as a barrier to participation in research by racial and ethnic minorities.17-21 Research findings support this hypothesis. In a study at a single university-based HIV clinic, patients with greater trust in their physician were more likely to be willing to volunteer for HIV clinical trials.22 Similarly, a survey conducted in the early years following the introduction of highly active antiretroviral therapy (HAART) found distrust in scientists and research institutions was associatedwith decreasedwillingness to participate in AIDS clinical trials.23 In that study, nearly one third of respondents considered AIDS researchers ethically comparable to the Tuskegee Syphilis scientists.
Conspiracy theories related to HIV have been described since early in the epidemic24,25 and provide a specific, yet complex example of institutional distrust in health care that may also influence individuals' willingness to participate in HIV related research.26-28 These beliefs include genocidal theories that the HIV virus was manufactured and intentionally released by the government to harm minority groups, and that the government is intentionally withholding treatment or even cures for HIV from the public.25 Prior research has shown that a sizable proportion of Americans surveyed endorse one or more conspiracy beliefs, but it is unclear whether endorsing these beliefs influences individuals' behavior. A survey of the general population found that conspiracy beliefs were correlated with negative attitudes about condoms and less frequent condom use.27 Among HIV-infected patients in clinical settings, these beliefs are common, 29,30 but not consistently associated with HIV-related health behaviors such as medication adherence and engagement in
care.30 One study of HIV-infected African American men found that while genocidal conspiracy beliefs were not associated with antiretroviral adherence, patients endorsing treatment-related conspiracy beliefs were significantly less likely to have optimal adherence over 1 month of follow-up.29 In the same sample, HIV-infected men who endorsed genocidal conspiracy beliefs were also more likely to report unprotected sex.31
Previous studies have not addressed the degree to which HIV conspiracy beliefs may influence willingness to participate in HIV prevention research in general, and HIV vaccine research in particular. More than 30 years into the HIV/AIDS epidemic, an effective HIV vaccine remains an elusive public health goal. Despite important discoveries about the effectiveness of prevention interventions, such as male circumcision32,33 and the use of antiretroviral drugs such as microbicides,34 prophylactic therapy for HIV-uninfected individuals,35,36 or life-long suppressive therapy for infected individuals,37 an effective vaccine able to confer long-term immunity is still considered a necessity if we are to eventually end the global AIDS pandemic.38 Our objectives with this research were to investigate (1) whether trust in research and HIV conspiracy beliefs differed by racial/ethnic group among community-recruited individuals in a large metropolitan area in the Midwest, and (2) whether trust in research and HIV conspiracy beliefs were associated with willingness to participate in HIV vaccine trials.
RESULTS
A third of shoppers invited to participate refused, leaving a final sample of 601 respondents: 33.0 % described themselves as white, 32.5 % as Mexican American, and 34.5 % as African American. There was no refusal pattern by race/ethnicity or gender. Demographic differences across racial/ethnic groups are shown in Table 1. Compared to whites and African Americans, Mexican American participants were younger, more likely to be married and less
likely to be unemployed. African Americans in the sample were significantly less likely to have attended college and were more likely to be unemployed or to have an annual household income less than $16,000.
Overall, therewas no significant difference in the composite trust in research scores across the three racial/ethnic groups (Table 1). For one of the four trust in research questions ("Doctors who do medical research care only about what is best for each patient"), Mexican American participants were more likely to agree or strongly (47.9 %) agree than African Americans (40.3 %) and whites (35.1 %; Table 2).
The composite score generated by the HIV conspiracy items was normally distributed, with an overall mean of 15.5 and standard deviation of 4.7. Cronbach's alpha was 0.80. Unlike the responses to the trust in research items, significant racial/ethnic differences were observed in responses to the HIV conspiracy questions. African American and Mexican American participants were more likely to agree or strongly agree with one or more of the six HIV conspiracy statements (59.0 % and 58.6 %, respectively) than white participants (38.9 %; Table 1). Of the individual HIV conspiracy items, the greatest disparities were observed for the statement "I believe doctors and scientists when they say that you can't get AIDS through social contact," with which only 40.9 % of African Americans agreed, compared to 47 % of Mexican American and 61 % of whites (Table 3). The groups similarly differed in their responses to the statement "The government is not telling us the whole story about how AIDS is spread," with African Americans (32.3 %) being more likely to agree than whites or Mexican American (19.4 % and 21.8 %, respectively). There were comparatively few respondents overall who endorsed the genocidal conspiracy item "The government is using AIDS as a way of killing off minority groups" (Table 3).
Regarding the main outcome of interest, African Americans were significantly more likely to express willingness to participate in an HIV vaccine study (58.9 % "probably willing" or "very willing") than Mexican American (49.7 %) and whites (38.3 %; Table 1). African Americans were also more likely to have volunteered for any research study in the past than whites (34.3 % vs. 26.4 %), but were less likely to have been a previous research participant than Mexican American participants (42.6 %; Table 1).
Several socioeconomic factors were significantly associated with willingness to participate in research in unadjusted ordinal logistic regression analysis (Table 4). African Americans and Mexican Americans were over 2.5 times and 1.5 times more willing to participate in research than whites, respectively.
Respondents were also more likely to report willingness to participate in research if they were younger, unemployed, earned less than $16,000 per year, and did not have private health insurance. Individuals with previous experience as a research volunteer had nearly twice the odds of beingwilling to participate in a future HIV vaccine study. Trust in research was significantly associated with greater willingness to participate (OR 1.92, 95 % CI 1.45-2.53 for every five-unit increase in composite trust score), but the composite level of agreement with HIV conspiracy beliefs had no such association (OR 1.00, 95 % CI 0.97-1.04). Adjustment for age, insurance status, previous research participation and overall trust in research did not attenuate the strong association between African American status and willingness to participate in research. In the multivariate model, the difference between Mexican American and white classification was no longer statistically significant. Similarly, marital status, low income and unemployment were not significant predictors of willingness to participate in the adjusted model. None of the individual HIV conspiracy items were associated with willingness to participate in research, nor did their inclusion in the final multivariate models change the magnitude or significance of any of the associations we detected (data not shown).
DISCUSSION
In this cross-sectional study of 601 community-recruited individuals in the Chicago metropolitan area, we observed that all racial/ethnic groups held HIV conspiracy beliefs to some degree, but a greater percentage of African Americans and Mexican Americans endorsed them than non-Hispanic whites. Endorsing such beliefs, however, did not appear to influence respondents' willingness to participate in an HIV vaccine study. In fact, African and Mexican Americans were more likely than whites to report willingness to participate in HIV research, even after adjusting for income, health insurance and previous participation in research.
Despite advances in the effectiveness and availability of medical therapy for HIV, we have not yet observed substantial decreases in HIV transmission on a national or global level.41 HIV vaccine research involving volunteer human subjects will therefore be necessary for the foreseeable future, and participation of racial and ethnic minority groups who are most heavily affected by HIV/AIDS will be essential for the success of these efforts. Our findings suggest that while misinformation about HIV research and treatment continues to circulate, it may be a less significant barrier to minority recruitment into HIV research studies than has been feared. Similar to previous studies, we found that trust in medical research is associated with increased willingness to participate in research. Unlike prior research on this topic, we did not observe higher levels of distrust among racial and ethnic minorities. Rather, in this specific case of HIV vaccine research, racial/ethnic minorities appear more willing than whites to volunteer for a research study.
Several potential explanations could account for these findings. Individuals' perception of the balance between risk of HIV and potential benefit of research participation may be a more important determinant of willingness to participate than institutional trust in health care or belief in conspiracy theories. African and Mexican Americans who acknowledge that their racial/ethnic groups are at greater risk for HIV infection may feel stronger motivation to pursue a potentially beneficial HIV vaccine trial, despite suspicions that the government is withholding information or even has nefarious intentions regarding HIV. Alternatively, given that the more commonly endorsed conspiracy statements in our study involved beliefs about HIV transmission, minorities may be paradoxically more likely to volunteer for a vaccine trial because uncertainty about the facts related to HIV transmission causes a greater level of perceived risk. It is possible that the HIV conspiracy beliefs used in this study may be poorly reflective of institutional trust in health care. Rather than being a manifestation of institutional trust, agreement with the conspiracy statements may reflect idiosyncratic, culturally-specific sentiments that are commonly acknowledged, but do not influence behaviors in the same way as more internalized health-related beliefs.
Our results support previous suggestions that the underrepresentation of minorities in medical research may reflect inadequate or inappropriately targeted recruitment efforts on the part of researchers, rather than low levels of willingness to participate on the part of minorities. A study conducted at an academic HIV clinic found that just over half of African American patients had ever been asked to participate in a study, and that 86% of those invited agreed to participate.42 In this study, trust in the medical profession was not associated with willingness to participate in research. Another survey of HIV-infected patients in Chicago found that 40 % had participated in research in the past, but only 29 % had ever been asked by their physician to consider joining a study.43 Reviewing data across 20 studies that reported consent rates by race or ethnicity, Wendler et al. reported that minorities were less likely to be recruited, but were equally likely to provide consent when asked to participate in health research studies.44 This line of evidence seems to indicate that disparities in access to research studies, rather than disparate attitudes and beliefs, underlie the underrepresentation of minorities in research.
Several methodological issues may limit the generalizability of our findings. The data were collected from a convenience sample of Chicago residents shopping at selected supermarkets, which may not be representative of the target populations likely to be recruited for HIV vaccine trials. Individuals who refused to participate in the survey may also be more reluctant to participate in HIV vaccine research, causing our data to overestimate the overall level of willingness to participate in research. We did not assess individuals' level of behavioral risk for HIV infection, which would influence whether they would be eligible for HIV vaccine studies and may shape attitudes and beliefs about HIV/AIDS. Assessing HIV conspiracy beliefs using a structured questionnaire could potentially over-estimate the importance of these beliefs. The very fact that the conspiracy statements were mentioned explicitly in a research questionnairemay lead to a perception of their legitimacy among some respondents. It may therefore be informative to interpret our results in the context of other studies that evaluate similar issues using complementary methods, such as qualitative interviews or focus groups.45, 46
These limitations notwithstanding, our study provides evidence that the medical profession and HIV research community are still failing to effectively communicate essential knowledge about HIV/AIDS, allowing the persistence of misperceptions and conspiracy beliefs about the government's role in HIV research and treatment. It is unique among related previous studies in directly comparing the attitudes and beliefs of white and African American individuals with Mexican Americans, who comprise the largest single Hispanic ethnic group in Chicago, rather than using a heterogeneous and culturally diverse category, such as Hispanic or Latino. In so doing, it confirms and builds upon previous reports indicating high levels of HIV conspiracy beliefs among Latinos.28 Future research should continue to seek to understand the roots of these beliefs among all racial/ethnic groups, as well as explanations for their persistence into the 21st century, a time when scientific knowledge and the technological capacity to facilitate mass communication of health information have achieved unprecedented levels of sophistication.
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