Literature DB >> 28275457

Willingness to participate and take risks in HIV cure research: survey results from 400 people living with HIV in the US.

Karine Dubé1, David Evans2, Laurie Sylla3, Jeff Taylor4, Bryan J Weiner5, Asheley Skinner6, Harsha Thirumurthy1, Joseph D Tucker7, Stuart Rennie8, Sandra B Greene1.   

Abstract

INTRODUCTION: Participation in early-phase HIV cure studies includes clinical risks with little to no likelihood of clinical benefit. Examining the willingness of people living with HIV to participate is important to guide study design and informed consent. Our study examined the overall willingness of people living with HIV to participate in HIV cure research in the US, focusing on perceived risks and benefits of participation.
METHODS: We undertook an online survey of adults living with HIV in the US. Survey questions were developed based on previous research and a scoping review of the literature. We quantitatively assessed individuals' perceived risks and benefits of HIV cure-related research and respondents' willingness to participate in different modalities of HIV cure studies.
RESULTS: We recruited 409 study participants of whom 400 were eligible for the study and were included in the analysis (nine were not eligible due to self-declared HIV-negative status). We found >50% willingness to participate in 14 different types of HIV cure studies. Perceived clinical benefits and social benefits were important motivators, while personal clinical risks appeared to deter potential participation. Roughly two-thirds of survey respondents (68%) indicated that they were somewhat willing to stop treatment as part of HIV cure research. In the bivariate models, females, African Americans/blacks, Hispanics, individuals in the lowest income bracket, people living with HIV for longer periods of their lives, and people who were self-perceived 'very healthy' were less willing to participate in certain types of HIV cure studies than others. Multivariate results showed the perceived benefits (adjusted odds ratios >1) and perceived risks (adjusted odds ratios <1) acted as potential motivators and deterrents to participation, respectively.
CONCLUSION: Our study is the first attempt to quantify potential motivators and deterrents of participation in HIV cure research in the US using perceived risks and benefits. The results offer guidance to HIV cure researchers and developers of interventions about the beneficial and detrimental characteristics of HIV cure strategies that are most meaningful to people living with HIV. The study also highlights new potential lines of inquiry for further social science and ethics research.

Entities:  

Keywords:  HIV cure research; perceived benefits; perceived risks; willingness to participate

Year:  2017        PMID: 28275457      PMCID: PMC5337420     

Source DB:  PubMed          Journal:  J Virus Erad        ISSN: 2055-6640


Introduction

The case of one individual, Timothy Ray Brown, thought to be cured of HIV, has inspired renewed scientific interest and investment in discovering an HIV cure, either one that eradicates the HIV reservoir, or one that induces mechanisms that result in durable viral suppression [1]. While researchers, bioethicists and regulators are attempting to minimise the risk to study participants, they must also balance the need to demonstrate that the intervention has the intended effect. As such, HIV cure research efforts carry great risks [2-4], including the need to withdraw antiretroviral therapy (ART) in order to prove whether a cure intervention has had its intended effect. To date, little data are available on willingness of people living with HIV to participate in HIV cure studies. Although a few studies have explored perceptions of HIV cure research [5-7], none have focused systematically on perceived risks and benefits of study participation. Such studies could allow for a more informed a priori process for intervention candidate selection, study design, and methods by which prospective participants are recruited, screened and informed about clinical research. This study reports results from a survey that explored individuals’ perceived risks and benefits of participation in HIV cure research in the US.

Methods

We administered an online, cross-sectional survey in autumn 2015 using Qualtrics software (Provo, Utah). We recruited study participants via a convenience sample of people living with HIV using established treatment and cure research listservs, including those for immune-based therapy (IBT), the Martin Delaney Collaboratories Community Advisory Board (MDC CAB), the AIDS Clinical Trials Group (ACTG), the AIDS Treatment Activists Coalition (ATAC) and others. Inclusion criteria for survey participation were: The recruitment method included a reference to contributing to a study on willingness to participate in HIV cure research. People could participate regardless of whether they were on ART. We focused on the US because of the growing momentum for HIV cure research in the country and increased investment in an already sophisticated research infrastructure with the capacity to undertake HIV cure clinical research. Persons self-reported to be living with HIV Willingness to answer survey questions ≥18 years of age Living in the US or its territories Ability to read/write in English Willingness to provide informed consent. The survey questions were developed by previous work in the field and our scoping review of the literature focused on risks and benefits of study participation [8]. We pilot tested the survey and vetted key terms and definitions with the members of HIV cure research community advisory boards. The Institutional Review Board (IRB) of the University of North Carolina at Chapel Hill approved the study and participants provided consent online.

Measures

The survey covered demographic characteristics, health status and perceptions, history with, and general interest in HIV cure-related research. Respondents reported yes/no/don't know about willingness to participate in each of the 14 types of HIV cure-related studies (listed in Figure 1). These correspond to the types of HIV cure studies most likely to enrol study participants in the coming years per our review of the literature (8). HIV cure study types were constructed as dichotomous variables by excluding all ‘don't know’ or incomplete responses. Additionally, using 5-point Likert scales, we asked survey respondents to rate 21 potential benefits and 35 potential risks in terms of how likely each one might motivate/discourage them from participation in studies. Given the distributions, the extreme answer (e.g. ‘very important’) was given a value of 1 and all other, lower levels of importance given a value of 0. We provided definitions of complex words in lay terms and used the survey as an educational opportunity for respondents. Figure 1 displays how the various study types were defined.
Figure 1.

Willingness to consider participating in HIV cure-related studies in the US, 2015. Leukaphereses and aphereses were defined as ‘laboratory procedures where selected immune cells are separated out from the blood and the rest of the blood is returned to the veins’. Therapeutic vaccines were defined as ‘vaccines that control disease in people already infected rather than vaccines that prevent infection’. Phase II or III studies were defined as safety and efficacy studies. Use of unique antibodies or molecules was defined as using, for example, a protein that has a dual function. Autologous transplants of stem cells were defined as ‘studies involving transplantation of your (autologous) stem cells’. First-in-human studies were defined as ‘studies that involve totally new treatments or approaches’. Intensification of treatment was defined as ‘studies that involve taking more than 3 different classes of drugs at the same time’. Latency reversing agents were defined as ‘studies that involve agents that could reactivate HIV that has become dormant inside the cells’. Allogeneic transplants of stem cells were defined as ‘studies that involve a transplantation of someone else's (allogeneic) stem cells’

Willingness to consider participating in HIV cure-related studies in the US, 2015. Leukaphereses and aphereses were defined as ‘laboratory procedures where selected immune cells are separated out from the blood and the rest of the blood is returned to the veins’. Therapeutic vaccines were defined as ‘vaccines that control disease in people already infected rather than vaccines that prevent infection’. Phase II or III studies were defined as safety and efficacy studies. Use of unique antibodies or molecules was defined as using, for example, a protein that has a dual function. Autologous transplants of stem cells were defined as ‘studies involving transplantation of your (autologous) stem cells’. First-in-human studies were defined as ‘studies that involve totally new treatments or approaches’. Intensification of treatment was defined as ‘studies that involve taking more than 3 different classes of drugs at the same time’. Latency reversing agents were defined as ‘studies that involve agents that could reactivate HIV that has become dormant inside the cells’. Allogeneic transplants of stem cells were defined as ‘studies that involve a transplantation of someone else's (allogeneic) stem cells’

Statistical analysis

We ran bivariate correlation tests between each individual-level characteristic and willingness to participate in 14 HIV cure study types, reporting Fisher's exact tests and odds ratios. Using multivariate analysis, we examined the relationships between perceptions of potential benefits and potential risks and willingness to participate in five specific HIV cure study types with high risk interventions: (1) latency-reversing agents; (2) allogeneic stem cell transplants; (3) autologous stem cell transplants; (4) therapeutic vaccines; and (5) antibodies or molecules. For each of the five HIV cure study types, we estimated separate logistic regression models for each perception of potential benefit as a motivator or potential risk as a deterrent as the key independent variable, controlling for demographics and health status characteristics. Because this is an exploratory analysis, and not testing any single specific hypothesis, we did not make any adjustments for multiple testing; rather, we present all results and associated P-values. All data analyses were conducted using Stata (version 11).

Results

Demographics

Of the 400 eligible participants (nine were not eligible due to self-declared HIV-negative status), representing 38 states and Puerto Rico, 343 respondents completed the survey by answering all questions and 57 partially completed the survey. Respondents were 78% men and ranged in ages between 19 and 74 years of age (median age 51). The sample was ethnically diverse: 65% Caucasians/whites, 17% African Americans/black, 12% Hispanic/Hispanic descent and 4% mixed race. Virtually all survey respondents had at least a high school degree or equivalent and nearly half had a 4-year degree or higher. More than one-third (37%) of survey respondents earned less than $25,000 annually and another third (35%) earned more than $50,000 (Table 1).
Table 1.

Demographic characteristics of survey respondents (n=400), United States, 2015

NumberPercentage (%)
Gender
 n400
 Male31078
 Female8622
 Transgender (male to female)30.8
 Transgender (female to male)00
 Other (did not specify)10.3
Age (years)
 n400
 Mean50
 Median51
 Minimum19
 Maximum74
 Age groups
 19–25144
 26–30113
 31–35246
 36–40277
 41–454612
 46–507318
 51–558321
 56–606416
 61–653910
 66–70113
 71–7482
Ethnicity
 n400
 Caucasian/white25865
 African American/black6617
 Hispanic or Hispanic descent4712
 Mixed154
 Asian or Asian descent72
 American Indian or Alaska Native20.5
 Native Hawaiian or Pacific Islander10.3
 Other41.0
Highest education level achieved
 n399
 Less than high school51
 High school or GED10125
 Some college246
 Associate degree7820
 Undergraduate degree10326
 Master's degree or its equivalent6617
 Doctorate or its equivalent (e.g. PhD, MD, JD)226
Yearly household income
 n399
 Less than $25,00014837
 $25,000–$50,00011128
 $50,001–$75,0004712
 $75,001–$100,0003810
 $100,001–$125,000297
 $125,001–$150,00092
 More than $150,000174
Self-reported current health status
 n400
 Very healthy8020
 Healthy17644
 Somewhat healthy12030
 Not very healthy185
 Not at all healthy51
 Don't know/not sure10.3
Control over own healthcare
 n400
 Yes32682
 No5414
 Don't know/not sure205
Currently taking HIV medication
 n400
 Yes39198
 No92
 Don't know/not sure00
Years since HIV diagnosis (years)
 n394
 Mean17
 Median18
 Minimum<1
 Maximum36
Percentage of lifetime with HIV-positive status (%)
 n394
 Up to 25 of lifetime14437
 26–50% of lifetime18747
 51–75% of lifetime5915
 More than 75% of lifetime41
Ever volunteered for an HIV treatment study
 n399
 Yes17544
 No21855
 Don't know/not sure62
General interest in HIV cure research
 n399
 Yes38596
 No51
 Don't know/not sure92
Demographic characteristics of survey respondents (n=400), United States, 2015

Willingness to participate in HIV cure-related studies

Figure 1 shows the hierarchy of the 14 different kinds of HIV cure-related studies that potential participants indicated they would be willing to join. There was a near universal willingness to participate in surveys, interviews, focus groups and basic blood draw studies (between 85% and 97%). For the other types of studies, willingness to participate ranged between 52% and 78%. Figure 2 disaggregates the data by sex/gender.
Figure 2.

Difference between female and male willingness to consider participating in HIV cure-related studies in the US, 2015. Transgender women are included in the Females category; P-values reflect the chi-squared test result for differences between females and males in answering ‘Yes’. *** Statistically significant at 0.1% level; ** statistically significant at 1% level; * statistically significant at 5% level

Difference between female and male willingness to consider participating in HIV cure-related studies in the US, 2015. Transgender women are included in the Females category; P-values reflect the chi-squared test result for differences between females and males in answering ‘Yes’. *** Statistically significant at 0.1% level; ** statistically significant at 1% level; * statistically significant at 5% level

Perceptions of potential benefits

Perceived clinical benefits or social benefits appeared to be more important motivators than personal benefits (Figure 3). Feeling good about contributing to HIV cure research was the most popular perceived personal benefit, and social benefits of helping find a cure for HIV; helping other people with HIV in the future; and contributing to scientific knowledge were three of the four highest ranked perceived benefits overall. Potential participants valued gaining knowledge about their health (78%), hoped their health would improve (73%), desired to improve their immune system (92%) and to reduce their HIV reservoir (85%). Figure 4 disaggregates these data by sex/gender.
Figure 3.

Respondents’ assessment of the importance of potential benefits to motivate participation in HIV cure-related studies in the US, 2015. Percentages reflect ‘Very important’; the remainder (up to 100%) includes the sum of ‘Somewhat important’, ‘Barely important’, ‘Not important’ and ‘Don't know/not applicable’

Figure 4.

Differences between females’ and males’ assessment of the importance of potential benefits to motivate participation in HIV cure-related studies in the US, 2015. Percentages reflect ‘Very important’. The remainder (up to 100%) includes the sum of ‘Somewhat important’, ‘Barely important’, ‘Not important’ and ‘Don't know/not sure’. Transgender women are included in the Females category. P-values reflect the chi-squared test result for differences between females and males in answering ‘Very important’; *** Statistically significant at 0.1% level; ** statistically significant at 1% level; * statistically significant at 5% level

Respondents’ assessment of the importance of potential benefits to motivate participation in HIV cure-related studies in the US, 2015. Percentages reflect ‘Very important’; the remainder (up to 100%) includes the sum of ‘Somewhat important’, ‘Barely important’, ‘Not important’ and ‘Don't know/not applicable’ Differences between females’ and males’ assessment of the importance of potential benefits to motivate participation in HIV cure-related studies in the US, 2015. Percentages reflect ‘Very important’. The remainder (up to 100%) includes the sum of ‘Somewhat important’, ‘Barely important’, ‘Not important’ and ‘Don't know/not sure’. Transgender women are included in the Females category. P-values reflect the chi-squared test result for differences between females and males in answering ‘Very important’; *** Statistically significant at 0.1% level; ** statistically significant at 1% level; * statistically significant at 5% level

Perceptions of potential risks and burdens

Personal clinical risks appeared to be more likely to deter potential participation than personal risks or burdens or potential social risks (Figure 5). Risks were defined as potential harms or complications, while burdens included drawbacks of participation such as intensive time commitments and discomforts. Activation of genes that could cause cancer (49%) and the possibility of developing resistance to HIV treatment (37%) were the most prevalent perceived deterrents. Spinal tap (26%) and bone marrow biopsies (22%) were the least acceptable study procedures. Hair loss was a stronger possible deterrent than more immediate symptoms/side effects, such as vomiting, pain, headache, or nausea. Finally, the risk of transmitting HIV to others (in the case of an unsuspected viral rebound) was a real possible social deterrent. Figure 6 disaggregates these data by sex/gender.
Figure 5.

Respondents’ assessment of the likelihood of potential risks and burdens to discourage participation in HIV cure-related states, US, 2015. Percentages reflect ‘Very likely to discourage’. The remainder (up to 100%) includes the sum of ‘Somewhat likely to discourage’, ‘Barely likely to discourage’, ‘Not likely to discourage’ and ‘Don't know/Not sure’

Figure 6.

Difference between females’ and males’ assessment of the likelihood of potential risks and burdens to discourage participation in HIV cure-related states in the US, 2015. Percentages reflect ‘Very likely to discourage’. The remainder (up to 100%) includes the sum of ‘Somewhat likely to discourage’, ‘Barely likely to discourage’, ‘Not likely to discourage’ and ‘Don't know/Not sure’. Transgender women are included in the Females category. P-values reflect the chi-squared test result for differences between females and males in answering ‘Very likely to discourage’. *** Statistically significant at 0.1% level. ** statistically significant at 1% level. * statistically significant at 5% level

Respondents’ assessment of the likelihood of potential risks and burdens to discourage participation in HIV cure-related states, US, 2015. Percentages reflect ‘Very likely to discourage’. The remainder (up to 100%) includes the sum of ‘Somewhat likely to discourage’, ‘Barely likely to discourage’, ‘Not likely to discourage’ and ‘Don't know/Not sure’ Difference between females’ and males’ assessment of the likelihood of potential risks and burdens to discourage participation in HIV cure-related states in the US, 2015. Percentages reflect ‘Very likely to discourage’. The remainder (up to 100%) includes the sum of ‘Somewhat likely to discourage’, ‘Barely likely to discourage’, ‘Not likely to discourage’ and ‘Don't know/Not sure’. Transgender women are included in the Females category. P-values reflect the chi-squared test result for differences between females and males in answering ‘Very likely to discourage’. *** Statistically significant at 0.1% level. ** statistically significant at 1% level. * statistically significant at 5% level Roughly two-thirds of survey respondents (68%) indicated they were somewhat or very willing to stop treatment as part of HIV cure research, versus 21% who were not at all or not very willing, and 11% who were not sure.

Other descriptive results

Of the survey respondents, 8% thought a cure for HIV infection was presently available and 3% thought a cure would never materialise; the majority of respondents was evenly split across a perceived time to cure. In open-ended responses, participants most commonly defined HIV cure as ‘not transmitting HIV to others’ (68%), ‘completely eliminating HIV from the body’ (68%), and ‘no more HIV treatment needed’ (65%), above ‘no longer testing positive on the antibody HIV test’ (31%).

Bivariate results: association of willingness to participate in HIV cure studies and demographics and health status characteristics

Using bivariate analyses (Appendices 3–17), we explored the socio-demographic and health status characteristics correlated with willingness to participate (WTP) in 14 HIV cure study types; significant results are summarised in Appendices 1–2. Briefly, females were less willing to participate in studies involving latency-reversing agents, gene modification, autologous stem cell transplant, and therapeutic vaccines. African Americans/blacks were less willing than Caucasians/whites to participate in studies involving latency-reversing agents, gene modification, autologous stem cell transplants, therapeutic vaccines, and antibodies or molecules. Hispanics were less willing to participate in studies involving autologous stem cell transplants, therapeutic vaccines, treatment intensification, and antibodies or molecules. Individuals in the lowest income bracket (<$25,000 household income) were much less willing to participate in nearly all of the studies than their peers in higher income brackets. Furthermore, individuals in poorer health were considerably more willing to participate in studies involving latency-reversing agents and allogeneic stem cell transplants than healthier people. Recently diagnosed individuals were nearly two to three times more willing to participate in studies than people who had lived with the virus for a larger proportion of their lives across seven of the ten interventional HIV cure study types.

Multivariate results: association of willingness to participate (WTP) in HIV cure studies and the self-assessed importance of potential benefits/risks as motivators/deterrents to participating

Multivariate results are shown in Tables 2 and 3. The summary results for the perceptions of the 21 potential benefits as very important motivators to participation are summarised in Table 2. The summary results for the perceptions of the 35 potential risks as very likely deterrents to participation can be found in Table 3. All models control for gender, age, ethnicity, education, income, region, health status, being in control of own healthcare, percentage of life lived with HIV, ever volunteered for HIV treatment study, ever volunteered for HIV cure study and general interest in HIV cure studies.
Table 2.

Odds ratios of willingness to participate in particular types of HIV cure-related studies based on perception that a potential benefit is a ‘Very Important’ motivating factor to participating in the US, 2015

Key independent (benefit) variableType of HIV cure-related study
Latency-reversing agentsAllogenic stem cell transplantAutologous stem cell transplantTherapeutic vaccineAntibodies
Potential personal benefit
Feel good contributing to HIV cure research1.785.69***6.98***8.34***5.91**
Gaining knowledge about own health/HIV1.493.39**2.81*2.451.99
Learning about new treatment options0.673.63***3.10*3.04*2.76
Not wanting to give up0.952.09*1.982.381.80
Hope that health will improve0.481.970.781.720.76
More/regular access to medical researchers1.522.41*2.201.611.68
Additional laboratory work free of charge2.032.90**3.54**2.405.42**
Regular access to a study nurse1.992.11*1.981.841.78
Transportation compensation to study site1.071.401.261.151.61
Being compensated or reimbursed0.982.37*1.691.201.50
Being offered a meal at the study site1.422.081.842.131.87
Potential personal clinical benefit
Preserve immune system ability to fight HIV1.671.642.033.32*3.93*
Reducing HIV reservoir or HIV in entire body3.09*2.64*3.56*2.542.96
Control viral load in absence of treatment1.682.43*2.832.812.82
Prevent increase in virus for extended time1.002.56*1.971.421.88
Less risk transmitting HIV to sex partner(s)0.581.461.522.051.73
Increased immune cell counts0.961.891.812.301.45
Potential social benefit
Helping find a cure for HIV3.75*12.46***10.10***8.09***5.48**
Helping other people with HIV in the future1.044.18*5.44**4.89*2.85
Contributing to scientific knowledge3.50*2.823.48*2.641.62
Receiving support from family and friends0.620.720.780.890.72

Each benefit variable was included in a separate model with the control variables: gender, age, ethnicity, education, income, region, health status, being in control of own healthcare, percentage of life lived with HIV, ever volunteered for HIV treatment study, ever volunteered for HIV cure study and general interest in HIV cure studies (except when omitted for perfect collinearity).

Odd ratios on the control variables are not displayed.

 Statistically significant at the 0.1% level;

 statistically significant at the 1% level;

 statistically significant at the 5% level.

Robust standard errors estimated.

Table 3.

Odds ratios of willingness to participate in particular types of HIV cure-related studies based on perception that a potential risk is ‘Very likely to discourage’ participation in studies in the US, 2015

Key independent (risk) variableType of HIV cure-related study
Latency-reversing agentsAllogenic stem cell transplantAutologous stem cell transplantTherapeutic vaccineAntibodies
Potential personal clinical risk
Activation of genes that could cause cancer0.22***0.22***0.31**0.35*0.38*
Possibility of developing resistance to drugs0.1***0.23***0.13***0.13***0.12***
Toxicities or adverse negative effects of drugs0.07***0.09***0.10***0.16***0.11***
Known risks of stopping HIV medications0.09***0.21***0.22***0.14***0.16***
Unable to predict viral rebound0.08***0.25***0.17***0.14***0.21***
Graft-versus-host disease0.1***0.12***0.10***0.11***0.11***
Invasive study procedures (e.g. biopsy)0.16***0.24**0.11***0.07***0.13***
Potential personal risk (commitment)
Long study visits (>4 hours each)0.16**0.32*0.12***0.16**0.13***
High frequency of study visits (>1 per month)0.18**0.21**0.09***0.09***0.13**
Long study duration and follow-up (>5 years)0.21*0.18*0.06***0.06***0.05***
Potential personal risk (study procedures)
Spinal tap0.15***0.09***0.05***0.09***0.11***
Bone marrow biopsies0.22***0.09***0.06***0.09***0.07***
Biopsies of lymph nodes0.27*0.20**0.10***0.08***0.12***
Rectal biopsies0.32*0.10***0.01***0.07***0.07***
Organ donation after death0.830.480.260.14**0.16*
Isolating white blood cells (may take 2 hours)0.240.08*0.01***0.08**0.02***
Collection of semen or vaginal fluids0.380.970.15*0.250.53
Oral biopsies (e.g. saliva samples)0.10**0.270.10**0.15*0.34
Blood draws0.870.170.16*0.150.12*
Potential personal risk (symptoms or side effects)
Hair loss0.23***0.44**0.33**0.30**0.23**
Vomiting0.480.13***0.12***0.13***0.23**
Pre-defined, controlled discomfort or pain0.19***0.23**0.09***0.12***0.16***
Nausea0.32*0.11***0.05***0.08***0.08***
Headache0.440.14***0.09***0.11***0.13***
Potential personal risk (burdens)
Difficulty finding/paying for parking at the site0.610.540.36*0.40*0.46
Difficulty finding transportation to the site0.680.440.430.440.55
Time away from work or school0.29*0.710.36*0.670.94
Time away from family0.840.640.370.920.46
Challenges of finding child care0.940.340.27*0.330.13*
Having to explain study participation to others0.20*0.13**0.07***0.17*0.02***
Potential social risk
Risk of transmitting HIV to a sexual partner0.26***0.40*0.28**0.37*0.24**
Discrimination0.29*0.22**0.10***0.26*0.19*
Stigma0.260.17**0.07***0.22*0.13*
Being recognized as a person living with HIV0.19*0.13***0.16**0.280.06***
Risk of losing ‘HIV-positive identity’ if cured1.040.330.14*0.481.67

Each risk variable was included in a separate model with the control variables: gender, age, ethnicity, education, income, region, health status, being in control of own healthcare, percentage of life lived with HIV, ever volunteered for HIV treatment study, ever volunteered for HIV cure study, and general interest in HIV cure studies (except when omitted for perfect collinearity).

Odd ratios on the control variables are not displayed.

 Statistically significant at the 0.1% level;

statistically significant at the 1% level;

statistically significant at the 5% level.

Robust standard errors estimated.

Odds ratios of willingness to participate in particular types of HIV cure-related studies based on perception that a potential benefit is a ‘Very Important’ motivating factor to participating in the US, 2015 Each benefit variable was included in a separate model with the control variables: gender, age, ethnicity, education, income, region, health status, being in control of own healthcare, percentage of life lived with HIV, ever volunteered for HIV treatment study, ever volunteered for HIV cure study and general interest in HIV cure studies (except when omitted for perfect collinearity). Odd ratios on the control variables are not displayed. Statistically significant at the 0.1% level; statistically significant at the 1% level; statistically significant at the 5% level. Robust standard errors estimated. Odds ratios of willingness to participate in particular types of HIV cure-related studies based on perception that a potential risk is ‘Very likely to discourage’ participation in studies in the US, 2015 Each risk variable was included in a separate model with the control variables: gender, age, ethnicity, education, income, region, health status, being in control of own healthcare, percentage of life lived with HIV, ever volunteered for HIV treatment study, ever volunteered for HIV cure study, and general interest in HIV cure studies (except when omitted for perfect collinearity). Odd ratios on the control variables are not displayed. Statistically significant at the 0.1% level; statistically significant at the 1% level; statistically significant at the 5% level. Robust standard errors estimated. Perceptions of benefits (Table 2) were positively correlated with willingness to participate. Respondents who rated feeling good about contributing to HIV cure research as a very important motivator had higher odds of being willing to participate in allogeneic stem cell transplant studies, autologous stem cell transplant studies, therapeutic vaccine studies and in antibody studies. The perception that helping find a cure for HIV as a very important motivator was associated with 12 times the odds of being willing to participate in allogeneic stem cell transplant studies. Perceptions of risks (Table 3) were negatively correlated with willingness to participate. In particular, perceptions that the potential personal clinical risks, as well as potential risk of pain or discomfort from study procedures (spinal tap, bone marrow biopsies, rectal biopsies, isolation of white blood cells) were more significant in magnitude than other types of risks, symptoms (except for nausea), burdens, and potential social risks. Moreover, a small number of survey respondents found the risk factors very likely to discourage them from participating (Figure 5), generally overlapping with those who were not willing to participate in any of the study types, partly explaining the strong associations.

Discussion

Our findings provide a unique perspective into willingness of individuals living with HIV in the US to participate in HIV cure-related studies, focusing on perceptions of risks and benefits. More than 50% of survey respondents indicated that they would be willing to participate in all types of HIV cure-related studies. The high apparent willingness to participate in HIV cure research and the belief that a cure for HIV was already available by a minority of respondents underscores the need to better educate potential study candidates about the different types of HIV cure studies and their potential risks in order to prevent therapeutic or curative misconception [9]. Our study extends the literature in several ways, in that, although willingness to participate may not correlate with actual participation, the study shows there is a strong level of willingness to participate in HIV cure research in a diverse population of people living with HIV in the US. Furthermore, this was the first attempt to quantify motivation and deterrence of participation in HIV cure-related studies using perceived risks and benefits. The results offer guidance to HIV cure researchers and developers of interventions about the beneficial and detrimental characteristics of HIV cure strategies that are most meaningful to people living with HIV. The study also revealed differences in motivation across HIV cure study types and differences by gender, ethnicity and perceived health status that may be actionable as part of research recruitment efforts. Descriptive results revealed potential misperceptions about clinical benefits. While people may be willing to participate in HIV cure research, they may be largely unaware of the potential risks and lack of direct clinical benefits in early HIV cure research and this has ethical implications for informed consent. For example, people living with HIV may expect to gain knowledge about their health but HIV cure research results are most often compiled and published in the aggregate and not returned to study participants. Hope that health will improve was also a strong motivator factor, yet there is a real possibility of individual harm while advancing scientific HIV cure knowledge. Reducing the HIV reservoir was perceived as a clinical benefit by potential participants, although a reservoir decrease may not confer direct clinical benefit. Thus, HIV cure research implementers need to be careful how knowledge of results, risk of harms, lack of direct clinical benefits and reservoir reductions are discussed in informed consent forms to avoid misperceptions around clinical benefits (or lack thereof). True informed consent and knowledge around clinical risks should be assured using tests of understanding in order to avoid underestimating risks and overestimating expectations for personal benefits. Furthermore, the risk of transmitting HIV to others (in the case of an unsuspected viral rebound) was a real possible demotivator (28% very likely to be discouraged). This result was reminiscent of similar prior surveys that showed the importance placed on reducing HIV transmission risk [6,10]. Although early HIV cure studies confer little to no clinical benefit [3,11], it is possible that study participants still perceive the likelihood of benefits when deciding to join studies, either through therapeutic misconception or other tendencies to overstate the potential for benefits whilst simultaneously discounting potential risks to self. Our findings also demonstrated the importance of not underestimating the contribution of emotional and psychological benefits in HIV cure research participation in general. The highest rated social and personal benefits were most often psychological in nature, consistent with similar studies from the HIV prevention and treatment literature [12,13]. HIV cure scientists should appreciate the perceived intangible benefits to participation and seriously consider the altruistic appeal to scientific advancement when conducting recruitment efforts, while emphasising the lack of direct medical benefits. We found that 68% of potential HIV cure research participants indicated they were very willing or somewhat willing to interrupt treatment as part of HIV cure research, consistent with a previously published US survey [7]. The finding is important because HIV treatment interruptions may become more prevalent as investigational HIV cure strategies start showing signals of potential efficacy.

Limitations

Several limitations of the study should be acknowledged. First, questions regarding willingness to participate were hypothetical and it remains to be seen whether potential volunteers would participate if the opportunity arises. While results should not be used to predict enrolment rates, responses can inform study designs, including understanding of risks and benefits and considerations for informed consent and recruitment efforts. Study participants may have had limited knowledge of the inherent risks of each HIV cure study type, and if they knew more about them their responses might change. While the high level of willingness to participate is encouraging, previous research in HIV and other diseases suggests that stated willingness will not translate into actual research participation to the same degree and we suspect social desirability bias. Second, the sample may have been biased to those who had access to HIV cure/treatment listservs and the internet. As such, the sample was not representative of the overall population of people living with HIV in the US (median age 51). Individuals without internet access, non-English speakers and minors were excluded. Yet, the sample had proportionally more females and was ethnically more diverse than a previous US survey on willingness to participate in HIV cure studies [7]. Third, referencing HIV cure research as part of the survey recruitment may have biased the sample towards those with an interest in finding a cure. Fourth, the complexity of the survey wording may have limited full understanding of items, although we mitigated this risk by providing definitions of key concepts in lay terms throughout the survey instrument.

Possible avenues for future research

Given the great risks involved in HIV cure research, we will need to better understand the role of altruism in high-risk/low-benefit studies. We will also need to better understand the factors that affect participation in specific types of HIV cure studies and assess potential participants’ knowledge and understanding of the various cure research modalities. Table 4 summarises potential future study questions around HIV cure research participation. Social science research can help guide meaningful community and stakeholder engagement, enhance patientparticipant and clinician–researcher communications and contribute to more successful clinical studies.
Table 4.

Future potential social sciences questions to inform study participation in biomedical HIV cure-related research

Meanings of cure

What are the various meanings of HIV cure research and how can we reconcile patient-participants, clinician-researchers and policy-makers/regulators’ perspectives?

What are the various meanings of ‘success’ in HIV cure research (including intermediate outcomes)?

What do potential participants understand about HIV cure research and how does that affect their willingness to participate?

Role of altruism

What role do altruism, expectations, optimism and hope play in HIV cure research participation?

Research with prospective study participants

How do demographic characteristics (such as age, gender, socio-economic status, nationality) relate to HIV cure understanding, acceptability and willingness to participate?

How do people undersand the purpose and risks of HIV cure studies?

How does people's perceptions and experiences of their own health impact their willingness to assume risk in HIV cure studies?

Discrete choice experiments borrowing from economic, cognitive psychology and decision-making literature – what are common trends in HIV cure research decision making (e.g. anchoring, judmental heuristics and defaulting to patterns)?

How can we increase recruitment of women and under-represented groups in HIV cure studies?

Would asking for long-term follow-up of study participants negatively affect overall recruitment or would long-term follow-up make study participants feel better?

How can we begin to study therapeutic (or curative) misconception in HIV cure research?

What motivations to join HIV cure studies are ethically questionable?

How does long-term survival with HIV affect willingness to participate and actual participation in HIV cure research?

What factors affect willingness to participate in studies that include treatment interruption?

Research with actual study participants

Would collaboration from biomedical HIV cure scientists, either retrospectively or prospectively as part of actual HIV cure studies (e.g. nested social sciences research), be required? What does HIV cure research mean for quality of life outcomes (such as Short-Form-36 Health Survey)?

What factors predict retention (or serial participation) in HIV cure studies?

Research with study decliners (more difficult)

What are some of the reasons that cause people living with HIV to decline participation in HIV cure research?

Research with clinician-researchers and policy-makers

How do clinician-researchers and policymakers view risks in HIV cure research?

Research ethics questions

What is an acceptable risk-benefit balance for potential HIV cure study participants?

Are there groups who are more vulnerable than others in HIV cure research?

How can HIV cure researchers best measure effective management of scientific uncertainty?

Future potential social sciences questions to inform study participation in biomedical HIV cure-related research What are the various meanings of HIV cure research and how can we reconcile patient-participants, clinician-researchers and policy-makers/regulators’ perspectives? What are the various meanings of ‘success’ in HIV cure research (including intermediate outcomes)? What do potential participants understand about HIV cure research and how does that affect their willingness to participate? What role do altruism, expectations, optimism and hope play in HIV cure research participation? How do demographic characteristics (such as age, gender, socio-economic status, nationality) relate to HIV cure understanding, acceptability and willingness to participate? How do people undersand the purpose and risks of HIV cure studies? How does people's perceptions and experiences of their own health impact their willingness to assume risk in HIV cure studies? Discrete choice experiments borrowing from economic, cognitive psychology and decision-making literature – what are common trends in HIV cure research decision making (e.g. anchoring, judmental heuristics and defaulting to patterns)? How can we increase recruitment of women and under-represented groups in HIV cure studies? Would asking for long-term follow-up of study participants negatively affect overall recruitment or would long-term follow-up make study participants feel better? How can we begin to study therapeutic (or curative) misconception in HIV cure research? What motivations to join HIV cure studies are ethically questionable? How does long-term survival with HIV affect willingness to participate and actual participation in HIV cure research? What factors affect willingness to participate in studies that include treatment interruption? Would collaboration from biomedical HIV cure scientists, either retrospectively or prospectively as part of actual HIV cure studies (e.g. nested social sciences research), be required? What does HIV cure research mean for quality of life outcomes (such as Short-Form-36 Health Survey)? What factors predict retention (or serial participation) in HIV cure studies? What are some of the reasons that cause people living with HIV to decline participation in HIV cure research? How do clinician-researchers and policymakers view risks in HIV cure research? What is an acceptable risk-benefit balance for potential HIV cure study participants? Are there groups who are more vulnerable than others in HIV cure research? How can HIV cure researchers best measure effective management of scientific uncertainty? Moving forward, it is essential that we pursue HIV cure-related research in a way that places the needs and perspectives of people living with HIV at the centre of research. Human studies in HIV cure are part of a growing field that raises several complex implementation challenges as well as ethical issues related to participation. Understanding perceptions of risks and benefits of HIV cure research participation and factors that affect decisions to participate can, thus, help inform study design and the development of ethical informed consent procedures, enhance recruitment efforts and contribute to researcher–community collaboration towards finding a cure.
Type of HIV cure-related study
CharacteristicLeukapheresis or apheresisLatency reversing agentsGene modificationautologous stem cell transplantAllogenic stem cell transplant
GenderFemales = 0.5 × WTP of MalesFemales = 0.4 × WTP of MalesFemales = 0.5 × WTP of Males
EthnicityAfrican-Americans = 0.3 × WTP of CaucasiansAfrican-Americans = 0.4 × WTP of CaucasiansAA=0.3 × WTP and Others = 0.2 × WTP of CaucasiansAA=0.3 × WTP and Hispanics = 0.4 × WTP of Caucasians
EducationDoctorates 100% WTP (vs. 68% High School graduates)
Household income$25k–$50k group = 3.6 × WTP of <$25k group$25k–$50k = 3.8 × WTP and $100k–$125k = 9.1 × WTP of <$25k group$25k–$50k group = 3.3 × WTP of <$25k group$25k–$50k group = 2.3 × WTP of <$25k group
Health statusNot Very/not At All Healthy = 9.2 × WTP of Very HealthyNot Very/not At All Healthy 100% WTP (vs 72% of others)
Percentage of life living with HIV diagnosisLiving with HIV <25% of Lifetime = 2.6 × WTP of othersLiving with HIV <25% of Lifetime = 2.9 × WTP of othersLiving with HIV <25% of Lifetime = 2.4 × WTP of othersLiving with HIV <25% of Lifetime = 1.9–3.0 × WTP of others
Ever volunteered for an HIV treatment study
Interested in HIV cure researchNon-interested 0% WTP (vs 90% of interested)Non-interested = 0.09 × WTP of interestedNon-interested 0% WTP (vs 84% of interested)Non-interested 0% WTP (vs 87% of interested)Non-interested 0% WTP (vs 76% of interested)

Age, region, being in control of own health care, currently taking HIV medications, and ever volunteered for an HIV cure study are not statistically significantly correlated with willingness to participate of any HIV cure-related study type. WTP=Willingness to Participate; AA=African Americans.

Type of HIV cure-related study
CharacteristicTherapeutic vaccinesTreatment intensificationAntibodies or moleculesFirst-in-human studiesPhase II/III studies
GenderFemales = 0.4 × WTP of Males
EthnicityCaucasians = 2.9 × WTP of AA, 3.6 × WTP of Hispanics, 9 × WTP of OthersHispanics = 0.4 × WTP of CaucasiansAA=0.3 × WTP and Hispanics = 0.3 × WTP of Caucasians
EducationCollege graduates 92% WTP (vs 81% of others)Doctorates 100% WTP (vs 75% all others)
Household income$25k–$50k group = 2.4 × WTP of <$25k group$25k–$50k group = 4.0 × WTP of <$25k group$25k–$50k group = 2.5 × WTP of <$25k group$25k–$50k group = 3.0 × WTP of <$25k group
Health status
Percentage of life living with HIV diagnosisLiving with HIV <25% of Lifetime = 2.4 × WTP of 25%–50% groupLiving with HIV <25% of Lifetime = 2.9 × WTP of othersLiving with HIV <25% of Lifetime = 2.6 × WTP of >50% group
Ever volunteered for an HIV treatment studyPrevious volunteers = 2.3 × WTP of non-volunteersPrevious volunteers = 2.2 × WTP of non-volunteers
Interested in HIV cure researchNon-interested 0% WTP (vs 89% of interested)Non-interested = 0.07 × WTP of interestedNon-interested 0% WTP (vs 91% of interested)Non-interested 0% WTP (vs 83% of interested)Non-interested 0% WTP (vs 91% of interested)

Age, region, being in control of own health care, currently taking HIV medications, and ever volunteered for an HIV cure study are not statistically significantly correlated with willingness to participate of any HIV cure-related study type. WTP=Willingness to Participate; AA=African Americans.

VariablenWillingness to participate in all 14 types of HIV cure-related studiesOdds ratio (95% CI)P-value
Yes (very willing to participate)No (relatively less willing to participate; willing to participate in 13 or fewer types but not all 14)
Gender    0.283
 Male284(79%)78(27%)206(73%)1.00
 Female73(20%)15(21%)58(79%)0.68(0.37–1.28)0.232
 Transgender male to female, Other4(1%)2(50%)2(50%)2.64(0.37–19.07)0.336
Age0.064
 19–2919(5%)6(32%)13(68%)1.00
 30–3942(12%)17(40%)25(60%)1.47(0.47–4.64)0.508
 40–4991(25%)27(30%)64(70%)0.91(0.31–2.66)0.869
 50–59142(39%)34(24%)108(76%)0.68(0.24–1.93)0.471
 60+67(19%)11(16%)56(84%)0.43(0.13–1.36)0.150
 As a continuous variable361(100%)0.97(0.95–0.99)0.005**
Ethnicity    0.224
 Caucasian/white240(66%)71(30%)169(70%)1.00
 African-American/black52(14%)12(23%)40(77%)0.71(0.35–1.44)0.347
 Hispanic or Hispanic descent43(12%)8(19%)35(81%)0.54(0.24–1.23)0.144
 Other12(3%)1(8%)11(92%)0.22(0.03–1.71)0.146
 Mixed14(4%)3(21%)11(79%)0.65(0.18–2.40)0.517
Education0.356
 High school or GED, or less89(25%)27(30%)62(70%)1.00
 Some college/Associate degree90(25%)26(29%)64(71%)0.93(0.49–1.77)0.832
 Undergraduate degree97(27%)26(27%)71(73%)0.84(0.44–1.59)0.594
 Master's degree or its equivalent62(17%)11(18%)51(82%)0.50(0.22–1.09)0.082
 Doctorate or its equivalent22(6%)4(18%)18(82%)0.51(0.16–1.65)0.261
Household income    0.471
 Less than $25,000127(35%)32(25%)95(75%)1.00
 $25,000–$50,000100(28%)31(31%)69(69%)1.33(0.74–2.39)0.333
 $50,001–$75,00045(13%)10(22%)35(78%)0.85(0.38–1.90)0.690
 $75,001–$100,00035(10%)7(20%)28(80%)0.74(0.30–1.86)0.525
 $100,001–$125,00028(8%)10(36%)18(64%)1.65(0.69–3.94)0.260
 $125,001–$150,0009(3%)3(33%)6(67%)1.48(0.35–6.28)0.592
 More than $150,00016(4%)2(13%)14(88%)0.42(0.09–1.97)0.273
Region0.699
 Northeast39(11%)9(23%)30(77%)1.00
 Midwest62(17%)13(21%)49(79%)0.88(0.34–2.32)0.803
 South126(35%)35(28%)91(72%)1.28(0.55–2.97)0.562
 West130(36%)36(28%)94(72%)1.28(0.55–2.95)0.568
Health status    <0.001***
 Very healthy68(19%)16(24%)52(76%)1.00
 Healthy162(45%)50(31%)112(69%)1.45(0.76–2.78)0.263
 Somewhat healthy110(31%)17(15%)93(85%)0.59(0.28–1.27)0.181
 Not very healthy/not at all healthy20(6%)12(60%)8(40%)4.88(1.70–14.01)0.003**
In control over own health care0.666
 No48(14%)14(29%)34(71%)1.00
 Yes298(86%)78(26%)220(74%)0.86(0.44–1.69)0.663
Percentage of life living with HIV diagnosis    <0.001***
 Up to 25%129(36%)53(41%)76(59%)1.00
 26–50%171(48%)29(17%)142(83%)0.29(0.17–0.50)<0.001***
 More than 50%56(16%)12(21%)44(79%)0.39(0.19–0.81)0.012*
 As a continuous variable356(100%)0.07(0.02–0.28)<0.001***
Ever volunteered for an HIV treatment study   0.075
 No199(56%)60(30%)139(70%)1.00
 Yes156(44%)34(22%)122(78%)0.65(0.40–1.05)0.078
Ever volunteered for an HIV cure study    0.014*
 No329(93%)93(28%)236(72%)1.00
 Yes25(7%)2(8%)23(92%)0.22(0.05–0.95)0.043*
Generally interested in HIV cure research     
 No5(1%)0(0%)5(100%)Perfect correlation
 Yes346(99%)95(27%)251(73%)  

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in surveys/questionnairesOR(95% CI)P-value1
YesNo
Gender    0.623
 Male272(80%)266(98%)6(2%)1.00
 Female67(20%)67(100%)0(0%)Perfect correlation
 Transgender male to female, other3(1%)3(100%)0(0%)Perfect correlation 
Age0.299
 19–2917(5%)17(100%)0(0%)Perfect correlation
 30–3940(12%)40(100%)0(0%)Perfect correlation
 40–4987(25%)83(95%)4(5%)0.31(0.05–1.71)0.177
 50–59138(40%)136(99%)2(1%)1.00
 60+60(18%)60(100%)0(0%)Perfect correlation
Ethnicity    0.227
 Caucasian/white229(67%)226(99%)3(1%)1.00
 African-American/black48(14%)47(98%)1(2%)0.62(0.06–6.15)0.686
 Hispanic or Hispanic descent40(12%)39(98%)1(3%)0.52(0.05–5.12)0.573
 Other11(3%)10(91%)1(9%)0.13(0.01–1.4)0.093
 Mixed14(4%)14(100%)0(0%)Perfect correlation 
Education0.773
 High school or GED, or less82(24%)81(99%)1(1%)1.00
 Some college/Associate degree86(25%)83(97%)3(3%)0.34(0.03–3.36)0.357
 Undergraduate degree92(27%)91(99%)1(1%)1.12(0.07–18.33)0.935
 Master's degree or its equivalent61(18%)60(98%)1(2%)0.74(0.05–12.14)0.833
 Doctorate or its equivalent20(6%)20(100%)0(0%)Perfect correlation
Household income0.316
 Less than $25,000119(35%)116(97%)3(3%)1.00
 $25,000–$50,00093(27%)93(100%)0(0%)Perfect correlation
 $50,001–$75,00043(13%)42(98%)1(2%)1.09(0.11–10.8)0.944
 $75,001–$100,00034(10%)32(94%)2(6%)0.41(0.07–2.6)0.346
 $100,001–$125,00028(8%)28(100%)0(0%)Perfect correlation
 $125,001–$150,0009(3%)9(100%)0(0%)Perfect correlation
 More than $150,00015(4%)15(100%)0(0%)Perfect correlation 
Region0.817
 Northeast63(18%)61(97%)2(3%)1.00
 Midwest158(46%)156(99%)2(1%)0.47(0.06–3.41)0.453
 South100(29%)98(98%)2(2%)0.96(0.13–6.94)0.967
 West20(6%)20(100%)0(0%)Perfect correlation
Health status    0.648
 Very healthy51(20%)35(69%)16 (31%)1.00
 Healthy111(44%)86(77%)25 (23%)2.56(0.35–18.62)0.354
 Somewhat healthy72(29%)48(67%)24 (33%)1.61(0.22–11.74)0.64
 Not very healthy/not at all healthy17(7%)17(100%)0(0%)Perfect correlation 
In control over own health care0.597
 No46(14%)45(98%)1(2%)1.00
 Yes284(86%)279(98%)5(2%)1.24(0.14–10.9)0.846
Currently taking HIV medication1.000
 No7(2%)7(100%)0(0%)Perfect correlation
 Yes335(98%)329(98%)6(2%)1.00
Percentage of life living with HIV diagnosis    0.448
 Up to 25%126(37%)124(98%)2(2%)1.00
 26–50%160(47%)158(99%)2(1%)1.27(0.18–9.2)0.81
 More than 50%51(15%)49(96%)2(4%)0.4(0.05–2.89)0.361
Ever volunteered for an HIV treatment study   0.237
 No189(56%)184(97%)5(3%)1.00
 Yes147(44%)146(99%)1(1%)3.97(0.46–34.44)0.211
Ever volunteered for an HIV cure study    1.000
 No314(93%)309(98%)5(2%)1.00
 Yes23(7%)23(100%)0(0%)Perfect correlation 
Generally interested in HIV cure research    1.000
 No5(1%)5(100%)0(0%)Perfect correlation
 Yes329(99%)324(98%)5(2%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

VariableTotal(n)WTP in interviewsOR(95% CI)P-value1
YesNo
Gender    0.812
 Male272(79%)255(94%)17(6%)1.00
 Female68(20%)65(96%)3(4%)1.44(0.41–5.09)0.567
 Transgender male to female, other3(1%)3(100%)0(0%)Perfect correlation 
Age0.521
 19–2917(5%)16(94%)1(6%)1.00
 30–3940(12%)39(98%)1(3%)2.44(0.14–41.57)0.538
 40–4988(26%)80(91%)8(9%)0.63(0.07–5.37)0.668
 50–59133(39%)125(94%)8(6%)0.98(0.11–8.35)0.983
 60+65(19%)63(97%)2(3%)1.97(0.17–23.18)0.59
Ethnicity    0.737
 Caucasian/white229(67%)217(95%)12(5%)1.00
 African-American/black49(14%)45(92%)4(8%)0.62(0.19–2.02)0.43
 Hispanic or Hispanic descent40(12%)37(93%)3(8%)0.68(0.18–2.54)0.568
 Other11(3%)11(100%)0(0%)Perfect correlation
 Mixed14(4%)13(93%)1(7%)0.72(0.09–5.98)0.76
Education0.806
 High school or GED, or less84(25%)77(92%)7(8%)1.00
 Some college/Associate degree83(24%)79(95%)4(5%)1.8(0.5–6.39)0.366
 Undergraduate degree94(27%)90(96%)4(4%)2.05(0.58–7.26)0.268
 Master's degree or its equivalent60(18%)56(93%)4(7%)1.27(0.35–4.57)0.711
 Doctorate or its equivalent21(6%)20(95%)1(5%)1.82(0.21–15.69)0.587
Household income    0.444
 Less than $25,000116(34%)109(94%)7(6%)1.00
 $25,000–$50,00095(28%)92(97%)3(3%)1.97(0.49–7.85)0.337
 $50,001–$75,00044(13%)41(93%)3(7%)0.88(0.22–3.56)0.855
 $75,001–$100,00035(10%)31(89%)4(11%)0.5(0.14–1.81)0.29
 $100,001–$125,00027(8%)26(96%)1(4%)1.67(0.2–14.22)0.639
 $125,001–$150,0009(3%)9(100%)0(0%)Perfect correlation
 More than $150,00016(5%)14(88%)2(13%)0.45(0.08–2.39)0.348
Region0.045*
 Northeast37(11%)35(95%)2(5%)1.00
 Midwest56(16%)48(86%)8(14%)0.34(0.07–1.72)0.193
 South124(36%)118(95%)6(5%)1.12(0.22–5.83)0.889
 West123(36%)119(97%)4(3%)1.7(0.3–9.7)0.55
Health status    0.660
 Very healthy66(19%)62(94%)4(6%)1.00
 Healthy154(45%)146(95%)8(5%)1.18(0.34–4.06)0.796
 Somewhat healthy103(30%)95(92%)8(8%)0.77(0.22–2.66)0.675
 Not very healthy/not at all healthy19(6%)19(100%)0(0%)Perfect correlation 
In control over own healthcare0.736
 No46(14%)43(93%)3(7%)1.00
 Yes284(86%)268(94%)16(6%)1.17(0.33–4.19)0.811
Currently taking HIV medication1.000
 No7(2%)7(100%)0(0%)Perfect correlation
 Yes336(98%)316(94%)20(6%)1.00 
Percentage of life living with HIV diagnosis    1.000
 Up to 25%126(37%)119(94%)7(6%)1.00
 26–50%163(48%)153(94%)10(6%)0.9(0.33–2.44)0.836
 More than 50%49(14%)46(94%)3(6%)0.9(0.22–3.65)0.885
Ever volunteered for an HIV treatment study   0.818
 No189(56%)177(94%)12(6%)1.00
 Yes150(44%)142(95%)8(5%)1.2(0.48–3.03)0.694
Ever volunteered for an HIV cure study    0.161
 No314(93%)297(95%)17(5%)1.00
 Yes24(7%)21(88%)3(13%)0.4(0.11–1.48)0.17
Generally interested in HIV cure research    0.243
 No5(1%)4(80%)1(20%)1.00
 Yes330(99%)313(95%)17(5%)4.6(0.49–43.6)0.183

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 5% level.

VariableTotal(n)WTP in focus groupsOR(95% CI)P-value1
YesNo
Gender    0.148
 Male261(78%)230(88%)31(12%)1.00
 Female69(21%)66(96%)3(4%)2.97(0.88–10.02)0.08
 Transgender male to female, other3(1%)3(100%)0(0%)Perfect correlation 
Age0.480
 19–2918(5%)15(83%)3(17%)1.00
 30–3939(12%)37(95%)2(5%)3.7(0.56–24.49)0.175
 40–4987(26%)79(91%)8(9%)1.98(0.47–8.33)0.354
 50–59127(38%)115(91%)12(9%)1.92(0.48–7.59)0.354
 60+62(19%)53(85%)9(15%)1.18(0.28–4.92)0.822
Ethnicity    0.817
 Caucasian/white222(67%)200(90%)22(10%)1.00
 African-American/black50(15%)46(92%)4(8%)1.27(0.42–3.85)0.679
 Hispanic or Hispanic descent37(11%)32(86%)5(14%)0.7(0.25–2)0.509
 Other10(3%)9(90%)1(10%)0.99(0.12–8.21)0.993
 Mixed14(4%)12(86%)2(14%)0.66(0.14–3.15)0.602
Education0.727
 High school or GED, or less85(26%)73(86%)12(14%)1.00
 Some college/Associate degree80(24%)73(91%)7(9%)1.71(0.64–4.61)0.285
 Undergraduate degree90(27%)81(90%)9(10%)1.48(0.59–3.72)0.405
 Master's degree or its equivalent57(17%)53(93%)4(7%)2.18(0.66–7.14)0.199
 Doctorate or its equivalent20(6%)18(90%)2(10%)1.48(0.3–7.22)0.628
Household income    0.020*
 Less than $25,000115(35%)100(87%)15(13%)1.00
 $25,000–$50,00094(28%)90(96%)4(4%)3.38(1.08–10.56)0.037*
 $50,001–$75,00040(12%)35(88%)5(13%)1.05(0.35–3.11)0.93
 $75,001–$100,00034(10%)29(85%)5(15%)0.87(0.29–2.6)0.803
 $100,001–$125,00026(8%)26(100%)0(0%)Perfect correlation
 $125,001–$150,0008(2%)8(100%)0(0%)Perfect correlation
 More than $150,00015(5%)11(73%)4(27%)0.41(0.12–1.47)0.171
Region0.362
 Northeast37(11%)36(97%)1(3%)1.00
 Midwest58(18%)52(90%)6(10%)0.24(0.03–2.09)0.197
 South120(36%)108(90%)12(10%)0.25(0.03–2)0.191
 West115(35%)100(87%)15(13%)0.19(0.02–1.46)0.109
Health status    0.690
 Very healthy63(19%)54(86%)9(14%)1.00
 Healthy149(45%)135(91%)14(9%)1.61(0.66–3.94)0.299
 Somewhat healthy102(31%)92(90%)10(10%)1.53(0.59–4.02)0.384
 Not very healthy/not at all healthy18(5%)17(94%)1(6%)2.83(0.33–24.08)0.34
In control over own healthcare1.000
 No45(14%)41(91%)4(9%)1.00
 Yes275(86%)247(90%)28(10%)0.86(0.29–2.59)0.789
Currently taking HIV medication1.000
 No5(2%)5(100%)0(0%)Perfect correlation
 Yes328(98%)294(90%)34(10%)1.00
Percentage of life living with HIV diagnosis    0.630
 Up to 25%123(38%)111(90%)12(10%)1.00
 26–50%155(47%)138(89%)17(11%)0.88(0.4–1.92)0.743
 More than 50%50(15%)47(94%)3(6%)1.69(0.46–6.29)0.431
Ever volunteered for an HIV treatment study   0.201
 No184(56%)161(88%)23(13%)1.00
 Yes144(44%)133(92%)11(8%)1.73(0.81–3.68)0.156
Ever volunteered for an HIV cure study    0.726
 No304(93%)273(90%)31(10%)1.00
 Yes24(7%)21(88%)3(13%)0.79(0.22–2.82)0.723
Generally interested in HIV cure research    0.397
 No5(2%)4(80%)1(20%)1.00
 Yes319(98%)289(91%)30(9%)2.41(0.26–22.32)0.439

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 5% level.

VariableTotal(n)WTP in basic blood draw studiesOR(95% CI)P-value1
YesNo
Gender    0.788
 Male267(78%)254(95%)13(5%)1.00
 Female71(21%)69(97%)2(3%)1.77(0.39–8.03)0.462
 Transgender male to female, other4(1%)4(100%)0(0%)Perfect correlation 
Age0.228
 19–2918(5%)18(100%)0(0%)Perfect correlation
 30–3942(12%)41(98%)1(2%)0.67(0.04–11.1)0.781
 40–4988(26%)80(91%)8(9%)0.16(0.02–1.35)0.093
 50–59132(39%)127(96%)5(4%)0.42(0.05–3.65)0.429
 60+62(18%)61(98%)1(2%)1.00
Ethnicity    0.355
 Caucasian/white231(68%)223(97%)8(3%)1.00
 African-American/black49(14%)46(94%)3(6%)0.55(0.14–2.16)0.391
 Hispanic or Hispanic descent38(11%)35(92%)3(8%)0.42(0.11–1.66)0.215
 Other11(3%)10(91%)1(9%)0.36(0.04–3.16)0.356
 Mixed13(4%)13(100%)0(0%)Perfect correlation 
Education0.894
 High school or GED, or less86(25%)82(95%)4(5%)1.00
 Some college/Associate degree79(23%)74(94%)5(6%)0.72(0.19–2.8)0.637
 Undergraduate degree95(28%)91(96%)4(4%)1.11(0.27–4.59)0.886
 Master's degree or its equivalent60(18%)58(97%)2(3%)1.41(0.25–8)0.695
 Doctorate or its equivalent21(6%)21(100%)0(0%)Perfect correlation
Household income    0.208
 Less than $25,000116(34%)108(93%)8(7%)1.00
 $25,000–$50,00096(28%)95(99%)1(1%)7.04(0.86–57.48)0.069
 $50,001–$75,00044(13%)42(95%)2(5%)1.56(0.32–7.65)0.587
 $75,001–$100,00034(10%)33(97%)1(3%)2.44(0.29–20.33)0.408
 $100,001–$125,00027(8%)26(96%)1(4%)1.93(0.23–16.14)0.546
 $125,001–$150,0008(2%)8(100%)0(0%)Perfect correlation
 More than $150,00016(5%)14(88%)2(13%)0.52(0.1–2.7)0.435
Region0.826
 Northeast37(11%)36(97%)1(3%)1.00
 Midwest60(18%)56(93%)4(7%)0.39(0.04–3.63)0.407
 South122(36%)117(96%)5(4%)0.65(0.07–5.76)0.699
 West120(35%)115(96%)5(4%)0.64(0.07–5.67)0.687
Health status    0.738
 Very healthy62(18%)58(94%)4(6%)1.00
 Healthy158(46%)152(96%)6(4%)1.75(0.47–6.43)0.401
 Somewhat healthy103(30%)98(95%)5(5%)1.35(0.35–5.25)0.663
 Not very healthy/not at all healthy18(5%)18(100%)0(0%)Perfect correlation 
In control over own healthcare0.413
 No44(13%)41(93%)3(7%)1.00
 Yes284(87%)273(96%)11(4%)1.82(0.49–6.8)0.376
Currently taking HIV medication1.000
 No7(2%)7(100%)0(0%)Perfect correlation
 Yes335(98%)320(96%)15(4%)1.00
Percentage of life living with HIV diagnosis    0.339
 Up to 25%127(38%)124(98%)3(2%)1.00
 26–50%160(47%)151(94%)9(6%)0.41(0.11–1.53)0.184
 More than 50%50(15%)47(94%)3(6%)0.38(0.07–1.95)0.246
Ever volunteered for an HIV treatment study   <0.001***
 No189(56%)174(92%)15(8%)1.00
 Yes148(44%)148(100%)0(0%)Perfect correlation 
Ever volunteered for an HIV cure study    0.614
 No312(93%)297(95%)15(5%)1.00
 Yes25(7%)25(100%)0(0%)Perfect correlation 
Generally interested in HIV cure research    0.013*
 No5(2%)3(60%)2(40%)1.00
 Yes328(98%)317(97%)11(3%)19.21(2.9–127.21)0.002**

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in leukapheresis or apheresis studiesOR(95% CI)P-value1
YesNo
Gender    0.343
 Male257(81%)229(89%)28(11%)1.00
 Female57(18%)47(82%)10(18%)0.57(0.26–1.26)0.169
 Transgender male to female, other3(1%)3(100%)0(0%)Perfect correlation 
Age0.728
 19–2915(5%)12(80%)3(20%)1.00
 30–3937(12%)34(92%)3(8%)2.83(0.5–16.03)0.239
 40–4983(26%)74(89%)9(11%)2.06(0.48–8.71)0.328
 50–59127(40%)112(88%)15(12%)1.87(0.47–7.4)0.374
 60+55(17%)47(85%)8(15%)1.47(0.34–6.41)0.609
Ethnicity    0.037*
 Caucasian/white219(69%)200(91%)19(9%)1.00
 African-American/black43(14%)33(77%)10(23%)0.31(0.13–0.73)0.008**
 Hispanic or Hispanic descent31(10%)25(81%)6(19%)0.4(0.14–1.09)0.072
 Other12(4%)10(83%)2(17%)0.48(0.1–2.33)0.359
 Mixed12(4%)11(92%)1(8%)1.05(0.13–8.57)0.967
Education0.345
 High school or GED, or less78(25%)66(85%)12(15%)1.00
 Some college/Associate degree72(23%)60(83%)12(17%)0.91(0.38–2.18)0.831
 Undergraduate degree90(28%)81(90%)9(10%)1.64(0.65–4.13)0.297
 Master's degree or its equivalent55(17%)51(93%)4(7%)2.32(0.7–7.63)0.166
 Doctorate or its equivalent21(7%)20(95%)1(5%)3.64(0.44–29.81)0.229
Household income    0.039*
 Less than $25,000108(34%)85(79%)23(21%)1.00
 $25,000–$50,00086(27%)80(93%)6(7%)3.61(1.39–9.33)0.008**
 $50,001–$75,00041(13%)36(88%)5(12%)1.95(0.69–5.54)0.211
 $75,001–$100,00032(10%)30(94%)2(6%)4.06(0.9–18.3)0.068
 $100,001–$125,00025(8%)24(96%)1(4%)6.49(0.83–50.75)0.075
 $125,001–$150,0009(3%)9(100%)0(0%)Perfect correlation
 More than $150,00015(5%)14(93%)1(7%)3.79(0.47–30.44)0.21
Region0.339
 Northeast31(10%)28(90%)3(10%)1.00
 Midwest56(18%)45(80%)11(20%)0.44(0.11–1.71)0.236
 South116(37%)104(90%)12(10%)0.93(0.24–3.53)0.913
 West110(35%)98(89%)12(11%)0.88(0.23–3.33)0.845
Health status    0.453
 Very healthy61(19%)53(87%)8(13%)1.00
 Healthy141(45%)124(88%)17(12%)1.1(0.45–2.71)0.834
 Somewhat healthy95(30%)83(87%)12(13%)1.04(0.4–2.73)0.93
 Not very healthy/not at all healthy19(6%)19(100%)0(0%)Perfect correlation 
In control over own healthcare0.322
 No45(15%)38(84%)7(16%)1.00
 Yes260(85%)232(89%)28(11%)1.53(0.62–3.75)0.356
Currently taking HIV medication1.000
 No7(2%)7(100%)0(0%)Perfect correlation
 Yes310(98%)272(88%)38(12%)1.00
Percentage of life living with HIV diagnosis    0.062
 Up to 25%121(39%)113(93%)8(7%)1.00
 26–50%144(46%)123(85%)21(15%)0.41(0.18–0.97)0.044*
 More than 50%48(15%)40(83%)8(17%)0.35(0.12–1.01)0.052
Ever volunteered for an HIV treatment study   0.158
 No174(56%)149(86%)25(14%)1.00
 Yes139(44%)127(91%)12(9%)1.78(0.86–3.68)0.123
Ever volunteered for an HIV cure study    1.000
 No287(92%)252(88%)35(12%)1.00
 Yes24(8%)21(88%)3(13%)0.97(0.28–3.44)0.965
Generally interested in HIV cure research    <0.001***
 No4(1%)0(0%)4(100%)Perfect correlation
 Yes304(99%)274(90%)30(10%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in studies involving latency reversing agentsOR(95% CI)P-value1
YesNo
Gender    0.059
 Male206(78%)154(75%)52(25%)1.00
 Female54(20%)33(61%)21(39%)0.53(0.28–1)0.049*
 Transgender male to female, Other4(2%)2(50%)2(50%)0.34(0.05–2.47)0.285
Age0.184
 19–2917(6%)11(65%)6(35%)1.00
 30–3934(13%)28(82%)6(18%)2.55(0.67–9.64)0.169
 40–4970(27%)49(70%)21(30%)1.27(0.42–3.9)0.673
 50–5995(36%)72(76%)23(24%)1.71(0.57–5.14)0.341
 60+48(18%)29(60%)19(40%)0.83(0.26–2.64)0.755
Ethnicity    0.012*
 Caucasian/white175(66%)137(78%)38(22%)1.00
 African-American/black42(16%)24(57%)18(43%)0.37(0.18–0.75)0.006**
 Hispanic or Hispanic descent29(11%)18(62%)11(38%)0.45(0.2–1.04)0.063
 Other6(2%)3(50%)3(50%)0.28(0.05–1.43)0.126
 Mixed12(5%)7(58%)5(42%)0.39(0.12–1.3)0.124
Education0.003**
 High school or GED, or less68(26%)46(68%)22(32%)1.00
 Some college/Associate degree66(25%)38(58%)28(42%)0.65(0.32–1.31)0.23
 Undergraduate degree71(27%)55(77%)16(23%)1.64(0.77–3.5)0.197
 Master's degree or its equivalent43(16%)34(79%)9(21%)1.81(0.74–4.42)0.195
 Doctorate or its equivalent15(6%)15(100%)0(0%)Perfect correlation
Household income    0.256
 Less than $25,00090(34%)60(67%)30(33%)1.00
 $25,000–$50,00076(29%)57(75%)19(25%)1.5(0.76–2.96)0.243
 $50,001–$75,00035(13%)21(60%)14(40%)0.75(0.33–1.68)0.485
 $75,001–$100,00024(9%)19(79%)5(21%)1.9(0.65–5.6)0.244
 $100,001–$125,00019(7%)17(89%)2(11%)4.25(0.92–19.67)0.064
 $125,001–$150,0006(2%)5(83%)1(17%)2.5(0.28–22.46)0.413
 More than $150,00014(5%)10(71%)4(29%)1.25(0.36–4.33)0.725
Region0.370
 Northeast27(10%)17(63%)10(37%)1.00
 Midwest49(19%)32(65%)17(35%)1.11(0.42–2.95)0.838
 South93(36%)71(76%)22(24%)1.9(0.76–4.75)0.171
 West92(35%)67(73%)25(27%)1.58(0.64–3.91)0.326
Health status    0.082
 Very healthy52(20%)33(63%)19(37%)1.00
 Healthy114(43%)84(74%)30(26%)1.61(0.8–3.26)0.183
 Somewhat healthy80(30%)56(70%)24(30%)1.34(0.64–2.82)0.435
 Not very healthy/not at all healthy17(6%)16(94%)1(6%)9.21(1.13–75.35)0.038*
In control over own healthcare1.000
 No36(14%)26(72%)10(28%)1.00
 Yes218(86%)157(72%)61(28%)0.99(0.45–2.18)0.98
Currently taking HIV medication0.580
 No4(2%)4(100%)0(0%)Perfect correlation
 Yes260(98%)185(71%)75(29%)1.00
Percentage of life living with HIV diagnosis    0.002**
 Up to 25%110(42%)91(83%)19(17%)1.00
 26–50%112(43%)73(65%)39(35%)0.39(0.21–0.73)0.003**
 More than 50%39(15%)23(59%)16(41%)0.3(0.13–0.67)0.004**
Ever volunteered for an HIV treatment study   0.097
 No152(58%)103(68%)49(32%)1.00
 Yes110(42%)85(77%)25(23%)1.62(0.92–2.84)0.093
Ever volunteered for an HIV cure study    0.794
 No244(93%)175(72%)69(28%)1.00
 Yes19(7%)13(68%)6(32%)0.85(0.31–2.34)0.76
Generally interested in HIV cure research    0.020*
 No5(2%)1(20%)4(80%)1.00
 Yes253(98%)187(74%)66(26%)11.33(1.24–103.67)0.032*

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in studies involving modification of patient's genes in immune cellsOR(95% CI)P-value1
YesNo
Gender    0.032*
 Male226(81%)190(84%)36(16%)1.00
 Female49(18%)34(69%)15(31%)0.43(0.21–0.87)0.019*
 Transgender male to female, other3(1%)2(67%)1(33%)0.38(0.03–4.31)0.434
Age0.428
 19–2916(6%)13(81%)3(19%)1.00
 30–3935(13%)32(91%)3(9%)2.46(0.44–13.86)0.307
 40–4975(27%)60(80%)15(20%)0.92(0.23–3.67)0.909
 50–59104(37%)85(82%)19(18%)1.03(0.27–3.99)0.963
 60+48(17%)36(75%)12(25%)0.69(0.17–2.86)0.611
Ethnicity    0.007**
 Caucasian/white181(65%)157(87%)24(13%)1.00
 African-American/black44(16%)29(66%)15(34%)0.3(0.14–0.63)0.002**
 Hispanic or Hispanic descent32(12%)25(78%)7(22%)0.55(0.21–1.4)0.209
 Other10(4%)6(60%)4(40%)0.23(0.06–0.87)0.031*
 Mixed11(4%)9(82%)2(18%)0.69(0.14–3.39)0.646
Education0.357
 High school or GED, or less66(24%)50(76%)16(24%)1.00
 Some college/Associate degree70(25%)55(79%)15(21%)1.17(0.53–2.62)0.697
 Undergraduate degree83(30%)71(86%)12(14%)1.89(0.82–4.35)0.133
 Master's degree or its equivalent41(15%)33(80%)8(20%)1.32(0.51–3.44)0.57
 Doctorate or its equivalent17(6%)16(94%)1(6%)5.12(0.63–41.85)0.128
Household income    0.013*
 Less than $25,00096(35%)67(70%)29(30%)1.00
 $25,000–$50,00079(28%)71(90%)8(10%)3.84(1.64–9.01)0.002**
 $50,001–$75,00035(13%)29(83%)6(17%)2.09(0.78–5.59)0.141
 $75,001–$100,00027(10%)23(85%)4(15%)2.49(0.79–7.86)0.12
 $100,001–$125,00022(8%)21(95%)1(5%)9.09(1.16–71.07)0.035*
 $125,001–$150,0007(3%)6(86%)1(14%)2.6(0.3–22.64)0.388
 More than $150,00012(4%)9(75%)3(25%)1.3(0.33–5.16)0.711
Region0.713
 Northeast25(9%)22(88%)3(12%)1.00
 Midwest51(19%)39(76%)12(24%)0.44(0.11–1.75)0.245
 South101(37%)82(81%)19(19%)0.59(0.16–2.18)0.427
 West98(36%)80(82%)18(18%)0.61(0.16–2.25)0.455
Health status    0.187
 Very healthy55(20%)42(76%)13(24%)1.00
 Healthy122(44%)104(85%)18(15%)1.79(0.8–3.98)0.154
 Somewhat healthy83(30%)64(77%)19(23%)1.04(0.47–2.34)0.919
 Not very healthy/not at all healthy17(6%)16(94%)1(6%)4.95(0.6–41.16)0.139
In control over own healthcare0.129
 No41(15%)30(73%)11(27%)1.00
 Yes227(85%)189(83%)38(17%)1.82(0.84–3.96)0.129
Currently taking HIV medication0.565
 No4(1%)3(75%)1(25%)1.00
 Yes274(99%)223(81%)51(19%)1.46(0.15–14.36)0.747
Percentage of life living with HIV diagnosis    0.028*
 Up to 25%111(41%)99(89%)12(11%)1.00
 26–50%122(45%)93(76%)29(24%)0.39(0.19–0.81)0.011*
 More than 50%41(15%)32(78%)9(22%)0.43(0.17–1.12)0.084
Ever volunteered for an HIV treatment study   0.351
 No155(57%)123(79%)32(21%)1.00
 Yes119(43%)100(84%)19(16%)1.37(0.73–2.56)0.326
Ever volunteered for an HIV cure study    0.212
 No256(94%)206(80%)50(20%)1.00
 Yes17(6%)16(94%)1(6%)3.88(0.5–30.09)0.194
Generally interested in HIV cure research    <0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes268(98%)225(84%)43(16%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal (n)WTP in autologous stem cell studiesOR (95% CI)P-value1
YesNo
Gender    0.067
 Male228(81%)198(87%)30(13%)1.00
 Female49(18%)37(76%)12(24%)0.47(0.22–1)0.049*
 Transgender male to female, other3(1%)2(67%)1(33%)0.3(0.03–3.46)0.337
Age0.522
 19–2916(6%)14(88%)2(13%)1.00
 30–3935(13%)31(89%)4(11%)1.11(0.18–6.79)0.912
 40–4972(26%)58(81%)14(19%)0.59(0.12–2.92)0.519
 50–59108(39%)95(88%)13(12%)1.04(0.21–5.14)0.958
 60+49(18%)39(80%)10(20%)0.56(0.11–2.87)0.484
Ethnicity    0.005**
 Caucasian/white189(68%)170(90%)19(10%)1.00
 African-American/black40(14%)28(70%)12(30%)0.26(0.11–0.6)0.001***
 Hispanic or Hispanic descent30(11%)23(77%)7(23%)0.37(0.14–0.97)0.043*
 Other12(4%)9(75%)3(25%)0.34(0.08–1.35)0.124
 Mixed9(3%)7(78%)2(22%)0.39(0.08–2.03)0.263
Education0.195
 High school or GED, or less67(24%)54(81%)13(19%)1.00
 Some college/Associate degree71(25%)57(80%)14(20%)0.98(0.42–2.28)0.963
 Undergraduate degree82(29%)70(85%)12(15%)1.4(0.59–3.33)0.441
 Master's degree or its equivalent43(15%)39(91%)4(9%)2.35(0.71–7.76)0.162
 Doctorate or its equivalent16(6%)16(100%)0(0%)Perfect correlation
Household income    0.053
 Less than $25,00098(35%)74(76%)24(24%)1.00
 $25,000–$50,00078(28%)71(91%)7(9%)3.29(1.33–8.13)0.01**
 $50,001–$75,00035(13%)28(80%)7(20%)1.3(0.5–3.35)0.591
 $75,001–$100,00028(10%)25(89%)3(11%)2.7(0.75–9.77)0.13
 $100,001–$125,00023(8%)22(96%)1(4%)7.14(0.91–55.98)0.062
 $125,001–$150,0006(2%)6(100%)0(0%)Perfect correlation
 More than $150,00011(4%)10(91%)1(9%)3.24(0.39–26.76)0.275
Region0.259
 Northeast28(10%)24(86%)4(14%)1.00
 Midwest47(17%)35(74%)12(26%)0.49(0.14–1.69)0.257
 South103(37%)89(86%)14(14%)1.06(0.32–3.52)0.925
 West99(36%)86(87%)13(13%)1.1(0.33–3.7)0.874
Health status    0.220
 Very healthy58(21%)48(83%)10(17%)1.00
 Healthy126(45%)108(86%)18(14%)1.25(0.54–2.91)0.605
 Somewhat healthy78(28%)63(81%)15(19%)0.88(0.36–2.12)0.768
 Not very healthy/not at all healthy17(6%)17(100%)0(0%)Perfect correlation 
In control over own healthcare0.151
 No39(14%)30(77%)9(23%)1.00
 Yes230(86%)198(86%)32(14%)1.86(0.81–4.28)0.146
Currently taking HIV medication0.595
 No6(2%)6(100%)0(0%)Perfect correlation
 Yes274(98%)231(84%)43(16%)1.00
Percentage of life living with HIV diagnosis    0.536
 Up to 25%111(40%)97(87%)14(13%)1.00
 26–50%124(45%)102(82%)22(18%)0.67(0.32–1.38)0.279
 More than 50%40(15%)34(85%)6(15%)0.82(0.29–2.3)0.703
Ever volunteered for an HIV treatment study   0.319
 No160(58%)132(83%)28(18%)1.00
 Yes116(42%)101(87%)15(13%)1.43(0.72–2.82)0.304
Ever volunteered for an HIV cure study    1.000
 No254(92%)214(84%)40(16%)1.00
 Yes21(8%)18(86%)3(14%)1.12(0.31–3.99)0.86
Generally interested in HIV cure research    <0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes269(98%)234(87%)35(13%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in allogenic stem cell studiesOR(95% CI)P-value1
YesNo
Gender    0.354
 Male205(81%)154(75%)51(25%)1.00
 Female44(17%)29(66%)15(34%)0.64(0.32–1.29)0.212
 Transgender male to female, other3(1%)3(100%)0(0%)Perfect correlation 
Age0.245
 19–2916(6%)12(75%)4(25%)1.00
 30–3930(12%)25(83%)5(17%)1.67(0.38–7.37)0.501
 40–4969(27%)53(77%)16(23%)1.1(0.31–3.91)0.878
 50–5994(37%)70(74%)24(26%)0.97(0.29–3.31)0.964
 60+43(17%)26(60%)17(40%)0.51(0.14–1.85)0.306
Ethnicity    0.091
 Caucasian/white170(67%)134(79%)36(21%)1.00
 African-American/black40(16%)26(65%)14(35%)0.5(0.24–1.05)0.069
 Hispanic or Hispanic descent26(10%)16(62%)10(38%)0.43(0.18–1.03)0.058
 Other9(4%)6(67%)3(33%)0.54(0.13–2.26)0.397
 Mixed7(3%)4(57%)3(43%)0.36(0.08–1.68)0.193
Education0.941
 High school or GED, or less63(25%)47(75%)16(25%)1.00
 Some college/Associate degree63(25%)44(70%)19(30%)0.79(0.36–1.73)0.552
 Undergraduate degree76(30%)56(74%)20(26%)0.95(0.44–2.05)0.902
 Master's degree or its equivalent38(15%)29(76%)9(24%)1.1(0.43–2.81)0.847
 Doctorate or its equivalent11(4%)9(82%)2(18%)1.53(0.3–7.87)0.61
Household income    0.197
 Less than $25,00086(34%)57(66%)29(34%)1.00
 $25,000–$50,00071(28%)58(82%)13(18%)2.27(1.07–4.81)0.032*
 $50,001–$75,00032(13%)24(75%)8(25%)1.53(0.61–3.82)0.367
 $75,001–$100,00026(10%)20(77%)6(23%)1.7(0.61–4.69)0.309
 $100,001–$125,00019(8%)16(84%)3(16%)2.71(0.73–10.1)0.137
 $125,001–$150,0006(2%)3(50%)3(50%)0.51(0.1–2.69)0.426
 More than $150,00011(4%)7(64%)4(36%)0.89(0.24–3.3)0.862
Region0.454
 Northeast26(10%)17(65%)9(35%)1.00
 Midwest46(18%)32(70%)14(30%)1.21(0.43–3.37)0.715
 South93(37%)73(78%)20(22%)1.93(0.75–4.99)0.174
 West84(34%)61(73%)23(27%)1.4(0.55–3.6)0.48
Health status    0.012*
 Very healthy51(20%)35(69%)16(31%)1.00
 Healthy111(44%)86(77%)25(23%)1.57(0.75–3.3)0.232
 Somewhat healthy72(29%)48(67%)24(33%)0.91(0.42–1.97)0.82
 Not very healthy/not at all healthy17(7%)17(100%)0(0%)Perfect correlation 
In control over own healthcare0.686
 No37(15%)26(70%)11(30%)1.00
 Yes205(85%)152(74%)53(26%)1.21(0.56–2.63)0.624
Currently taking HIV medication1.000
 No4(2%)3(75%)1(25%)1.00
 Yes248(98%)183(74%)65(26%)0.94(0.1–9.22)0.957
Percentage of life living with HIV diagnosis    0.022*
 Up to 25%105(42%)86(82%)19(18%)1.00
 26–50%108(44%)76(70%)32(30%)0.52(0.27–1)0.051
 More than 50%35(14%)21(60%)14(40%)0.33(0.14–0.77)0.01**
Ever volunteered for an HIV treatment study   0.380
 No149(60%)113(76%)36(24%)1.00
 Yes99(40%)70(71%)29(29%)0.77(0.43–1.37)0.37
Ever volunteered for an HIV cure study    1.000
 No232(94%)171(74%)61(26%)1.00
 Yes15(6%)11(73%)4(27%)0.98(0.3–3.2)0.975
Generally interested in HIV cure research    0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes242(98%)184(76%)58(24%)  

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in studies with therapeutic vaccinesOR(95% CI)P-value1
YesNo
Gender    0.029*
 Male248(80%)222(90%)26(10%)1.00
 Female60(19%)47(78%)13(22%)0.42(0.2–0.89)0.022*
 Transgender male to female, other3(1%)2(67%)1(33%)0.23(0.02–2.68)0.243
Age0.343
 19–2917(5%)17(100%)0(0%)Perfect correlation
 30–3939(13%)35(90%)4(10%)1.4(0.39–5.02)0.606
 40–4978(25%)64(82%)14(18%)0.73(0.28–1.88)0.517
 50–59119(38%)105(88%)14(12%)1.2(0.47–3.05)0.702
 60+58(19%)50(86%)8(14%)1.00
Ethnicity    0.001***
 Caucasian/white209(67%)192(92%)17(8%)1.00
 African-American/black48(15%)38(79%)10(21%)0.34(0.14–0.79)0.013*
 Hispanic or Hispanic descent33(11%)25(76%)8(24%)0.28(0.11–0.71)0.007**
 Other9(3%)5(56%)4(44%)0.11(0.03–0.45)0.002**
 Mixed12(4%)11(92%)1(8%)0.97(0.12–8.03)0.98
Education0.045*
 High school or GED, or less74(24%)61(82%)13(18%)1.00
 Some college/Associate degree77(25%)62(81%)15(19%)0.88(0.39–2.01)0.763
 Undergraduate degree86(28%)79(92%)7(8%)2.41(0.9–6.4)0.079
 Master's degree or its equivalent53(17%)48(91%)5(9%)2.05(0.68–6.15)0.202
 Doctorate or its equivalent20(6%)20(100%)0(0%)Perfect correlation
Household income    0.032*
 Less than $25,000105(34%)82(78%)23(22%)1.00
 $25,000–$50,00087(28%)78(90%)9(10%)2.43(1.06–5.59)0.036*
 $50,001–$75,00037(12%)34(92%)3(8%)3.18(0.89–11.32)0.074
 $75,001–$100,00034(11%)31(91%)3(9%)2.9(0.81–10.37)0.102
 $100,001–$125,00026(8%)26(100%)0(0%)Perfect correlation
 $125,001–$150,0007(2%)7(100%)0(0%)Perfect correlation
 More than $150,00015(5%)13(87%)2(13%)1.82(0.38–8.69)0.451
Region0.239
 Northeast31(10%)26(84%)5(16%)1.00
 Midwest55(18%)44(80%)11(20%)0.77(0.24–2.47)0.659
 South112(36%)98(88%)14(13%)1.35(0.44–4.09)0.6
 West109(36%)99(91%)10(9%)1.9(0.6–6.07)0.276
Health status    0.065
 Very healthy62(20%)53(85%)9(15%)1.00
 Healthy139(45%)126(91%)13(9%)1.65(0.66–4.09)0.283
 Somewhat healthy91(29%)74(81%)17(19%)0.74(0.31–1.79)0.502
 Not very healthy/not at all healthy18(6%)18(100%)0(0%)Perfect correlation 
In control over own healthcare0.474
 No45(15%)38(84%)7(16%)1.00
 Yes256(85%)225(88%)31(12%)1.34(0.55–3.26)0.523
Currently taking HIV medication1.000
 No6(2%)6(100%)0(0%)Perfect correlation
 Yes305(98%)265(87%)40(13%)1.00
Percentage of life living with HIV diagnosis    0.081
 Up to 25%120(39%)111(93%)9(8%)1.00
 26–50%142(46%)119(84%)23(16%)0.42(0.19–0.95)0.037*
 More than 50%46(15%)39(85%)7(15%)0.45(0.16–1.3)0.14
Ever volunteered for an HIV treatment study   0.084
 No171(56%)144(84%)27(16%)1.00
 Yes136(44%)124(91%)12(9%)1.94(0.94–3.99)0.073
Ever volunteered for an HIV cure study    0.054
 No281(92%)242(86%)39(14%)Perfect correlation
 Yes24(8%)24(100%)0(0%)1.00 
Generally interested in HIV cure research    <0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes299(98%)267(89%)32(11%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in studies involving intensification of treatmentOR(95% CI)P-value1
YesNo
Gender    0.291
 Male217(79%)169(78%)48(22%)1.00
 Female55(20%)41(75%)14(25%)0.83(0.42–1.65)0.599
 Transgender male to female, other4(1%)2(50%)2(50%)0.28(0.04–2.08)0.215
Age0.663
 19–2915(5%)12(80%)3(20%)1.00
 30–3937(13%)27(73%)10(27%)0.68(0.16–2.91)0.598
 40–4974(27%)57(77%)17(23%)0.84(0.21–3.33)0.802
 50–59103(37%)83(81%)20(19%)1.04(0.27–4.04)0.958
 60+47(17%)33(70%)14(30%)0.59(0.14–2.42)0.463
Ethnicity    0.069
 Caucasian/white185(67%)148(80%)37(20%)1.00
 African-American/black43(16%)33(77%)10(23%)0.83(0.37–1.83)0.635
 Hispanic or Hispanic descent29(11%)17(59%)12(41%)0.35(0.16–0.81)0.014*
 Other10(4%)6(60%)4(40%)0.38(0.1–1.4)0.145
 Mixed9(3%)8(89%)1(11%)2(0.24–16.56)0.52
Education0.050*
 High school or GED, or less67(24%)55(82%)12(18%)1.00
 Some college/Associate degree67(24%)46(69%)21(31%)0.48(0.21–1.08)0.075
 Undergraduate degree76(28%)59(78%)17(22%)0.76(0.33–1.73)0.51
 Master's degree or its equivalent50(18%)36(72%)14(28%)0.56(0.23–1.35)0.198
 Doctorate or its equivalent15(5%)15(100%)0(0%)Perfect correlation
Household income    0.531
 Less than $25,000104(38%)75(72%)29(28%)1.00
 $25,000–$50,00073(26%)60(82%)13(18%)1.78(0.85–3.73)0.124
 $50,001–$75,00033(12%)25(76%)8(24%)1.21(0.49–2.99)0.682
 $75,001–$100,00027(10%)22(81%)5(19%)1.7(0.59–4.93)0.327
 $100,001–$125,00021(8%)18(86%)3(14%)2.32(0.63–8.49)0.204
 $125,001–$150,0007(3%)5(71%)2(29%)0.97(0.18–5.28)0.969
 More than $150,00011(4%)7(64%)4(36%)0.68(0.18–2.49)0.557
Region0.580
 Northeast26(10%)20(77%)6(23%)1.00
 Midwest46(17%)32(70%)14(30%)0.69(0.23–2.08)0.505
 South100(37%)80(80%)20(20%)1.2(0.43–3.39)0.731
 West100(37%)76(76%)24(24%)0.95(0.34–2.64)0.922
Health status    0.122
 Very healthy47(17%)32(68%)15(32%)1.00
 Healthy127(46%)102(80%)25(20%)1.91(0.9–4.07)0.092
 Somewhat healthy85(31%)63(74%)22(26%)1.34(0.61–2.94)0.461
 Not very healthy/not at all healthy16(6%)15(94%)1(6%)7.03(0.84–58.52)0.071
In control over own healthcare1.000
 No39(15%)30(77%)9(23%)1.00
 Yes229(85%)176(77%)53(23%)1(0.44–2.23)0.993
Currently taking HIV medication1.000
 No5(2%)4(80%)1(20%)1.00
 Yes271(98%)208(77%)63(23%)0.83(0.09–7.55)0.865
Percentage of life living with HIV diagnosis    0.261
 Up to 25%104(38%)85(82%)19(18%)1.00
 26–50%125(46%)94(75%)31(25%)0.68(0.36–1.29)0.236
 More than 50%44(16%)31(70%)13(30%)0.53(0.24–1.21)0.132
Ever volunteered for an HIV treatment study   0.885
 No158(58%)122(77%)36(23%)1.00
 Yes114(42%)87(76%)27(24%)0.95(0.54–1.68)0.863
Ever volunteered for an HIV cure study    0.771
 No258(94%)197(76%)61(24%)1.00
 Yes16(6%)13(81%)3(19%)1.34(0.37–4.88)0.655
Generally interested in HIV cure research    0.010**
 No5(2%)1(20%)4(80%)1.00
 Yes262(98%)206(79%)56(21%)14.71(1.61–134.84)0.017*

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in use of unique antibodies, proteins or moleculesOR(95% CI)P-value1
YesNo
Gender    0.162
 Male239(81%)215(90%)24(10%)1.00
 Female52(18%)42(81%)10(19%)0.47(0.21–1.05)0.067
 Transgender male to female, Other3(1%)3(100%)0(0%)Perfect correlation 
Age0.806
 19–2915(5%)14(93%)1(7%)1.00
 30–3939(13%)35(90%)4(10%)0.63(0.06–6.12)0.686
 40–4974(25%)63(85%)11(15%)0.41(0.05–3.45)0.411
 50–59114(39%)103(90%)11(10%)0.67(0.08–5.6)0.711
 60+52(18%)45(87%)7(13%)0.46(0.05–4.07)0.485
Ethnicity    0.028*
 Caucasian/white195(66%)180(92%)15(8%)1.00
 African-American/black42(14%)33(79%)9(21%)0.31(0.12–0.76)0.01**
 Hispanic or Hispanic descent35(12%)28(80%)7(20%)0.33(0.12–0.89)0.029*
 Other11(4%)9(82%)2(18%)0.38(0.07–1.9)0.236
 Mixed11(4%)10(91%)1(9%)0.83(0.1–6.98)0.866
Education0.129
 High school or GED, or less65(22%)54(83%)11(17%)1.00
 Some college/Associate degree74(25%)62(84%)12(16%)1.05(0.43–2.58)0.911
 Undergraduate degree83(28%)76(92%)7(8%)2.21(0.8–6.08)0.124
 Master's degree or its equivalent53(18%)49(92%)4(8%)2.5(0.74–8.37)0.139
 Doctorate or its equivalent18(6%)18(100%)0(0%)Perfect correlation
Household income    0.033*
 Less than $25,00099(34%)79(80%)20(20%)1.00
 $25,000–$50,00083(28%)78(94%)5(6%)3.95(1.41–11.07)0.009**
 $50,001–$75,00038(13%)33(87%)5(13%)1.67(0.58–4.84)0.344
 $75,001–$100,00030(10%)27(90%)3(10%)2.28(0.63–8.3)0.212
 $100,001–$125,00024(8%)24(100%)0(0%)Perfect correlation
 $125,001–$150,0007(2%)7(100%)0(0%)Perfect correlation
 More than $150,00013(4%)12(92%)1(8%)3.04(0.37–24.86)0.3
Region0.235
 Northeast29(10%)26(90%)3(10%)1.00
 Midwest52(18%)42(81%)10(19%)0.48(0.12–1.93)0.304
 South107(37%)94(88%)13(12%)0.83(0.22–3.16)0.79
 West102(35%)94(92%)8(8%)1.36(0.33–5.49)0.67
Health status    0.255
 Very healthy61(21%)52(85%)9(15%)1.00
 Healthy134(46%)122(91%)12(9%)1.76(0.7–4.44)0.231
 Somewhat healthy83(28%)71(86%)12(14%)1.02(0.4–2.61)0.96
 Not very healthy/not at all healthy15(5%)15(100%)0(0%)Perfect correlation 
In control over own healthcare0.306
 No43(15%)36(84%)7(16%)1.00
 Yes240(85%)214(89%)26(11%)1.6(0.65–3.97)0.31
Currently taking HIV medication1.000
 No5(2%)5(100%)0(0%)Perfect correlation
 Yes289(98%)255(88%)34(12%)1.00
Percentage of life living with HIV diagnosis    0.039*
 Up to 25%119(41%)112(94%)7(6%)1.00
 26–50%132(45%)112(85%)20(15%)0.35(0.14–0.86)0.022*
 More than 50%40(14%)34(85%)6(15%)0.35(0.11–1.13)0.079
Ever volunteered for an HIV treatment study   0.041*
 No161(56%)137(85%)24(15%)1.00
 Yes129(44%)120(93%)9(7%)2.34(1.04–5.23)0.039*
Ever volunteered for an HIV cure study    0.145
 No270(93%)236(87%)34(13%)1.00
 Yes20(7%)20(100%)0(0%)Perfect correlation 
Generally interested in HIV cure research    <0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes282(98%)256(91%)26(9%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 1% level;

 statistically significant at 5% level.

VariableTotal (n)WTP in first-in-human studiesOR (95% CI)P-value1
YesNo
Gender    0.841
 Male211(80%)170(81%)41(19%)1.00
 Female49(19%)38(78%)11(22%)0.83(0.39–1.77)0.635
 Transgender male to female, other3(1%)3(100%)0(0%)Perfect correlation 
Age0.849
 19–2918(7%)16(89%)2(11%)1.00
 30–3934(13%)27(79%)7(21%)0.48(0.09–2.62)0.398
 40–4968(26%)52(76%)16(24%)0.41(0.08–1.96)0.263
 50–5993(35%)75(81%)18(19%)0.52(0.11–2.48)0.413
 60+50(19%)41(82%)9(18%)0.57(0.11–2.94)0.501
Ethnicity    0.237
 Caucasian/white174(66%)144(83%)30(17%)1.00
 African-American/black41(16%)32(78%)9(22%)0.74(0.32–1.71)0.483
 Hispanic or Hispanic descent27(10%)18(67%)9(33%)0.42(0.17–1.02)0.055
 Other10(4%)7(70%)3(30%)0.49(0.12–1.99)0.316
 Mixed11(4%)10(91%)1(9%)2.08(0.26–16.96)0.493
Education0.097
 High school or GED, or less65(25%)55(85%)10(15%)1.00
 Some college/Associate degree66(25%)51(77%)15(23%)0.62(0.25–1.5)0.288
 Undergraduate degree76(29%)61(80%)15(20%)0.74(0.31–1.78)0.502
 Master's degree or its equivalent40(15%)28(70%)12(30%)0.42(0.16–1.1)0.079
 Doctorate or its equivalent15(6%)15(100%)0(0%)Perfect correlation
Household income    0.060
 Less than $25,000101(39%)76(75%)25(25%)1.00
 $25,000–$50,00068(26%)60(88%)8(12%)2.47(1.04–5.87)0.041*
 $50,001–$75,00034(13%)29(85%)5(15%)1.91(0.67–5.47)0.229
 $75,001–$100,00026(10%)22(85%)4(15%)1.81(0.57–5.77)0.316
 $100,001–$125,00019(7%)16(84%)3(16%)1.75(0.47–6.54)0.402
 $125,001–$150,0005(2%)4(80%)1(20%)1.32(0.14–12.38)0.81
 More than $150,0009(3%)4(44%)5(56%)0.26(0.07–1.06)0.06
Region0.946
 Northeast29(11%)22(76%)7(24%)1.00
 Midwest47(18%)38(81%)9(19%)1.34(0.44–4.12)0.606
 South92(35%)74(80%)18(20%)1.31(0.48–3.54)0.597
 West92(35%)74(80%)18(20%)1.31(0.48–3.54)0.597
Health status    0.377
 Very healthy49(19%)38(78%)11(22%)1.00
 Healthy123(47%)102(83%)21(17%)1.41(0.62–3.19)0.416
 Somewhat healthy75(29%)57(76%)18(24%)0.92(0.39–2.16)0.842
 Not very healthy/not at all healthy15(6%)14(93%)1(7%)4.05(0.48–34.48)0.2
In control over own healthcare0.523
 No41(16%)31(76%)10(24%)1.00
 Yes212(84%)171(81%)41(19%)1.35(0.61–2.97)0.463
Currently taking HIV medication1.000
 No5(2%)4(80%)1(20%)1.00
 Yes258(98%)207(80%)51(20%)1.01(0.11–9.31)0.99
Percentage of life living with HIV diagnosis    0.094
 Up to 25%106(41%)91(86%)15(14%)1.00
 26–50%112(43%)90(80%)22(20%)0.67(0.33–1.38)0.283
 More than 50%40(16%)28(70%)12(30%)0.38(0.16–0.92)0.032*
Ever volunteered for an HIV treatment study   0.115
 No145(56%)111(77%)34(23%)1.00
 Yes114(44%)97(85%)17(15%)1.75(0.92–3.33)0.089
Ever volunteered for an HIV cure study    1.000
 No241(93%)192(80%)49(20%)1.00
 Yes17(7%)14(82%)3(18%)1.19(0.33–4.32)0.79
Generally interested in HIV cure research    <0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes254(98%)211(83%)43(17%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 5% level.

VariableTotal(n)WTP in Phase II or Phase III studiesOR(95% CI)P-value1
YesNo
Gender    0.155
 Male237(80%)212(89%)25(11%)1.00
 Female57(19%)48(84%)9(16%)0.63(0.28–1.44)0.271
 Transgender male to female, other3(1%)2(67%)1(33%)0.24(0.02–2.71)0.246
Age0.156
 19–2916(5%)15(94%)1(6%)1.00
 30–3939(13%)37(95%)2(5%)1.23(0.1–14.7)0.868
 40–4975(25%)60(80%)15(20%)0.27(0.03–2.19)0.219
 50–59111(37%)100(90%)11(10%)0.61(0.07–5.06)0.644
 60+56(19%)50(89%)6(11%)0.56(0.06–5)0.6
Ethnicity    0.321
 Caucasian/white197(66%)178(90%)19(10%)1.00
 African-American/black44(15%)37(84%)7(16%)0.56(0.22–1.44)0.232
 Hispanic or Hispanic descent33(11%)27(82%)6(18%)0.48(0.18–1.31)0.153
 Other10(3%)8(80%)2(20%)0.43(0.08–2.16)0.304
 Mixed13(4%)12(92%)1(8%)1.28(0.16–10.44)0.817
Education0.370
 High school or GED, or less71(24%)63(89%)8(11%)1.00
 Some college/Associate degree72(24%)62(86%)10(14%)0.79(0.29–2.13)0.638
 Undergraduate degree85(29%)76(89%)9(11%)1.07(0.39–2.95)0.892
 Master's degree or its equivalent48(16%)40(83%)8(17%)0.63(0.22–1.83)0.4
 Doctorate or its equivalent20(7%)20(100%)0(0%)Perfect correlation
Household income    0.019*
 Less than $25,000102(34%)85(83%)17(17%)1.00
 $25,000–$50,00080(27%)75(94%)5(6%)3(1.05–8.54)0.04*
 $50,001–$75,00038(13%)36(95%)2(5%)3.6(0.79–16.44)0.098
 $75,001–$100,00029(10%)24(83%)5(17%)0.96(0.32–2.88)0.942
 $100,001–$125,00025(8%)24(96%)1(4%)4.8(0.61–38.06)0.138
 $125,001–$150,0007(2%)7(100%)0(0%)Perfect correlation
 More than $150,00015(5%)10(67%)5(33%)0.4(0.12–1.32)0.133
Region0.746
 Northeast34(12%)29(85%)5(15%)1.00
 Midwest53(18%)45(85%)8(15%)0.97(0.29–3.26)0.961
 South102(35%)91(89%)11(11%)1.43(0.46–4.45)0.541
 West104(35%)93(89%)11(11%)1.46(0.47–4.55)0.516
Health status    0.186
 Very healthy55(19%)45(82%)10(18%)1.00
 Healthy142(48%)128(90%)14(10%)2.03(0.84–4.9)0.115
 Somewhat healthy83(28%)72(87%)11(13%)1.45(0.57–3.71)0.432
 Not very healthy/not at all healthy16(5%)16(100%)0(0%)Perfect correlation 
In control over own healthcare0.613
 No43(15%)37(86%)6(14%)1.00
 Yes244(85%)216(89%)28(11%)1.25(0.48–3.23)0.644
Currently taking HIV medication1.000
 No6(2%)6(100%)0(0%)Perfect correlation
 Yes291(98%)256(88%)35(12%)1.00
Percentage of life living with HIV diagnosis    0.194
 Up to 25%115(39%)106(92%)9(8%)1.00
 26–50%133(46%)113(85%)20(15%)0.48(0.21–1.1)0.083
 More than 50%44(15%)39(89%)5(11%)0.66(0.21–2.1)0.484
Ever volunteered for an HIV treatment study   0.047*
 No162(55%)137(85%)25(15%)1.00
 Yes131(45%)121(92%)10(8%)2.21(1.02–4.79)0.045*
Ever volunteered for an HIV cure study    0.088
 No270(92%)235(87%)35(13%)1.00
 Yes22(8%)22(100%)0(0%)Perfect correlation 
Generally interested in HIV cure research    <0.001***
 No5(2%)0(0%)5(100%)Perfect correlation
 Yes285(98%)259(91%)26(9%)1.00 

 Fisher's exact test statistic for the categorical variable(in italics) and P-values shown for the odds ratios next to individual categories.

 Statistically significant at 0.1% level;

 statistically significant at 5% level.

  10 in total

Review 1.  Towards an HIV cure: a global scientific strategy.

Authors:  Steven G Deeks; Brigitte Autran; Ben Berkhout; Monsef Benkirane; Scott Cairns; Nicolas Chomont; Tae-Wook Chun; Melissa Churchill; Michele Di Mascio; Christine Katlama; Alain Lafeuillade; Alan Landay; Michael Lederman; Sharon R Lewin; Frank Maldarelli; David Margolis; Martin Markowitz; Javier Martinez-Picado; James I Mullins; John Mellors; Santiago Moreno; Una O'Doherty; Sarah Palmer; Marie-Capucine Penicaud; Matija Peterlin; Guido Poli; Jean-Pierre Routy; Christine Rouzioux; Guido Silvestri; Mario Stevenson; Amalio Telenti; Carine Van Lint; Eric Verdin; Ann Woolfrey; John Zaia; Françoise Barré-Sinoussi
Journal:  Nat Rev Immunol       Date:  2012-07-20       Impact factor: 53.106

2.  The therapeutic misconception: informed consent in psychiatric research.

Authors:  P S Appelbaum; L H Roth; C Lidz
Journal:  Int J Law Psychiatry       Date:  1982

3.  Experiences and expectations of participants completing an HIV cure focused clinical trial.

Authors:  James H McMahon; Julian H Elliott; Janine Roney; Michelle Hagenauer; Sharon R Lewin
Journal:  AIDS       Date:  2015-01-14       Impact factor: 4.177

Review 4.  Ethical considerations in HIV cure research: points to consider.

Authors:  Bernard Lo; Christine Grady
Journal:  Curr Opin HIV AIDS       Date:  2013-05       Impact factor: 4.283

5.  Towards Multidisciplinary HIV-Cure Research: Integrating Social Science with Biomedical Research.

Authors:  Cynthia I Grossman; Anna Laura Ross; Judith D Auerbach; Jintanat Ananworanich; Karine Dubé; Joseph D Tucker; Veronica Noseda; Cristina Possas; Dianne M Rausch
Journal:  Trends Microbiol       Date:  2015-11-28       Impact factor: 17.079

Review 6.  Motivators to participation in medical trials: the application of social and personal categorization.

Authors:  Shayesta Dhalla; Gary Poole
Journal:  Psychol Health Med       Date:  2013-01-30       Impact factor: 2.423

7.  HIV cure research: expanding the ethical considerations.

Authors:  Jeremy Sugarman
Journal:  Ann Intern Med       Date:  2013-10-01       Impact factor: 25.391

8.  What motivates participation in HIV cure trials? A call for real-time assessment to improve informed consent.

Authors:  Holly L Peay; Gail E Henderson
Journal:  J Virus Erad       Date:  2015-01-01

9.  Participation in HIV cure-related research: a scoping review of the proxy literature and implications for future research.

Authors:  Karine Dubé; Catalina Ramirez; Jessica Handibode; Jeffrey Taylor; Asheley Skinner; Sandra Greene; Joseph D Tucker
Journal:  J Virus Erad       Date:  2015-10

10.  Recruitment and ethical considerations in HIV cure trials requiring treatment interruption.

Authors:  Michael P Arnold; David Evans; Nelson Vergel
Journal:  J Virus Erad       Date:  2015-01-01
  10 in total
  41 in total

1.  Participant Perspectives in an HIV Cure-Related Trial Conducted Exclusively in Women in the United States: Results from AIDS Clinical Trials Group 5366.

Authors:  Karine Dubé; Lara Hosey; Kate Starr; Liz Barr; David Evans; Erin Hoffman; Danielle M Campbell; Jane Simoni; Jeremy Sugarman; John Sauceda; Brandon Brown; Karen L Diepstra; Catherine Godfrey; Daniel R Kuritzkes; David A Wohl; Rajesh Gandhi; Eileen Scully
Journal:  AIDS Res Hum Retroviruses       Date:  2020-04       Impact factor: 2.205

2.  "We Need to Deploy Them Very Thoughtfully and Carefully": Perceptions of Analytical Treatment Interruptions in HIV Cure Research in the United States-A Qualitative Inquiry.

Authors:  Karine Dubé; David Evans; Lynda Dee; Laurie Sylla; Jeff Taylor; Asheley Skinner; Bryan J Weiner; Sandra B Greene; Stuart Rennie; Joseph D Tucker
Journal:  AIDS Res Hum Retroviruses       Date:  2017-07-10       Impact factor: 2.205

3.  Perceptions of HIV Virologic Control Strategies Among Younger and Older Age Groups of People Living with HIV in the United States: A Cross-Sectional Survey.

Authors:  Parya Saberi; Shadi Eskaf; John Sauceda; David Evans; Karine Dubé
Journal:  AIDS Res Hum Retroviruses       Date:  2020-05-27       Impact factor: 2.205

4.  The Dose Response: Perceptions of People Living with HIV in the United States on Alternatives to Oral Daily Antiretroviral Therapy.

Authors:  Karine Dubé; Shadi Eskaf; David Evans; John Sauceda; Parya Saberi; Brandon Brown; Dawn Averitt; Krista Martel; Maria Meija; Danielle Campbell; Liz Barr; John Kanazawa; Kelly Perry; Hursch Patel; Stuart Luter; Tonia Poteat; Judith D Auerbach; David A Wohl
Journal:  AIDS Res Hum Retroviruses       Date:  2019-12-04       Impact factor: 2.205

5.  Acceptability of Cell and Gene Therapy for Curing HIV Infection Among People Living with HIV in the Northwestern United States: A Qualitative Study.

Authors:  Karine Dubé; Jane Simoni; Michael Louella; Laurie Sylla; Zahra H Mohamed; Hursch Patel; Stuart Luter; Ann C Collier
Journal:  AIDS Res Hum Retroviruses       Date:  2019-05-21       Impact factor: 2.205

6.  Understanding Willingness to Participate in HIV Biomedical Research: A Mixed Methods Investigation.

Authors:  Ji-Young Lee; Sara M St George; Torsten B Neilands; Allan Rodriguez; Daniel J Feaster; Adam W Carrico
Journal:  AIDS Behav       Date:  2021-06-15

7.  Indirect Benefits in HIV Cure Clinical Research: A Qualitative Analysis.

Authors:  Adam Gilbertson; Elizabeth Poole Kelly; Stuart Rennie; Gail Henderson; JoAnn Kuruc; Joseph D Tucker
Journal:  AIDS Res Hum Retroviruses       Date:  2018-08-22       Impact factor: 2.205

8.  Perceptions of Equipoise, Risk-Benefit Ratios, and "Otherwise Healthy Volunteers" in the Context of Early-Phase HIV Cure Research in the United States: A Qualitative Inquiry.

Authors:  Karine Dubé; Lynda Dee; David Evans; Laurie Sylla; Jeff Taylor; Brandon Brown; Veronica Miller; Amy Corneli; Asheley Skinner; Sandra B Greene; Joseph D Tucker; Stuart Rennie
Journal:  J Empir Res Hum Res Ethics       Date:  2017-10-06       Impact factor: 1.742

9.  Considerations for Increasing Racial, Ethnic, Gender, and Sexual Diversity in HIV Cure-Related Research with Analytical Treatment Interruptions: A Qualitative Inquiry.

Authors:  Karine Dubé; John Kanazawa; Chadwick Campbell; Cheriko A Boone; Allysha C Maragh-Bass; Danielle M Campbell; Moisés Agosto-Rosario; Jamila K Stockman; Dázon Dixon Diallo; Tonia Poteat; Mallory Johnson; Parya Saberi; John A Sauceda
Journal:  AIDS Res Hum Retroviruses       Date:  2021-05-31       Impact factor: 2.205

10.  HIV Cure Research: Risks Patients Expressed Willingness to Accept.

Authors:  Allison Kratka; Peter A Ubel; Karen Scherr; Benjamin Murray; Nir Eyal; Christine Kirby; Madelaine N Katz; Lisa Holtzman; Kathryn Pollak; Kenneth Freedburg; Jennifer Blumenthal-Barby
Journal:  Ethics Hum Res       Date:  2019-11
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