Perceptions of HIV Research Participation Among Gay, Bisexual, and Other Men who Have Sex with Men and Transgender and Nonbinary Adults: Results From a Midwest Pride Event

Author(s):  
Andrea R. Kaniuka ◽  
Meagan Zarwell ◽  
Robert J. Cramer ◽  
Katherine Quinn ◽  
Michelle Broaddus ◽  
...  

Human immunodeficiency virus (HIV) continues to disproportionately affect gay, bisexual, and other men who have sex with men (GBM) and transgender and nonbinary (trans/NB) individuals. This study investigated attitudes toward participation in HIV survey research, guided by Emanuel's framework for ethical clinical research (e.g., risk–benefit ratio, fair participant selection, respect for participants, social value, and collaborative partnership). GBM ( n = 294) and trans/NB ( n = 86) persons recruited at a Pride event in Milwaukee completed a survey assessing risks and benefits of participation in, and comfort responding to, sexual health surveys. Participants reported few ethical concerns (e.g., privacy and confidentiality), with notable differences by race, sexual orientation and gender identity, and prior research experiences. Implications for HIV research with GBM and trans/NB individuals are discussed.

Author(s):  
Paul Miller ◽  
Kemesha Kelly ◽  
Nicola Spawls

This paper is written in the context of researching children generally, and in the context of researching vulnerable children, namely children who are HIV +. Research carries with it various notions of power and ethics, often manifested in terms of a researcher’s positionality (ie: Insider/Outsider), the intended use of the research findings and accessing the field of enquiry. In the context of the research experiences being reported in this paper, researcher positionality was of only limited consequence. However, the intended use of the research’s output was crucial to gaining access to the field (namely children who are HIV +), since paramount to ‘gate keepers’ (namely state officials and partners) were such issues as safeguarding children and the protection of their right to privacy and confidentiality.


2021 ◽  
Vol 33 (6) ◽  
pp. 465-482
Author(s):  
Sameena Azhar ◽  
Xiangyu Tao ◽  
Vaidehi Jokhakar ◽  
Celia B. Fisher

We collected 216 responses from sexually active MSM, transgender women, and gender-nonconforming (GNC) people of color through a web-based survey to understand the facilitators and barriers to research participation in a hypothetical LAI PrEP trial. In adjusted models, these items were found to be significantly associated with research participation likelihood: ever participated in HIV research study; comfort with taking daily pill; comfort with providing urine sample; and concerns over potential side effects of shot. Asian participants were more concerned about others knowing they were being recruited than were Black and Latinx respondents F(2, 216) = 3.98; p < .05. Asian respondents were also less comfortable with being recruited at organizations serving communities of color than Black and Latinx respondents, F(2, 216) = 5.10; p < .05. Cisgender respondents were more comfortable with being recruited by a friend or colleague than were transgender/GNC respondents, F(1, 215) = 4.8; p < .05.


10.2196/28311 ◽  
2021 ◽  
Vol 5 (12) ◽  
pp. e28311
Author(s):  
Roman Shrestha ◽  
Celia Fisher ◽  
Jeffrey A Wickersham ◽  
Antoine Khati ◽  
Rayne Kim ◽  
...  

Background The use of mobile health (mHealth), including smartphone apps, can improve the HIV prevention cascade for key populations such as men who have sex with men (MSM). In Malaysia, where stigma and discrimination toward MSM are high, the mHealth platform has the potential to open new frontiers for HIV prevention efforts. However, little guidance is available to inform researchers about privacy and confidentiality concerns unique to the development and implementation of app-based HIV prevention programs. Objective Given the lack of empirical data in this area, we aim to understand the privacy and confidentiality concerns associated with participation in a hypothetical app-based research study for HIV prevention efforts. Methods A cross-sectional, web-based survey was conducted between June and July 2020 among 355 Malaysian MSM. The survey included demographic and sexual health questions and a series of short videos describing a hypothetical app-based HIV prevention program, followed by questions related to privacy and confidentiality concerns in each step of the app-based program (ie, recruitment, clinical interaction, risk assessment, and weekly reminder). Multivariable logistic regression models were used to identify the correlates of willingness to use such an app-based program. Results Most of the participants (266/355, 74.9%) indicated their willingness to participate in a hypothetical mHealth app–based HIV prevention program. Participants expressed concerns about privacy, confidentiality, data security, and risks and benefits of participating in all stages of the app-based HIV research process. Multivariate analyses indicated that participants who had a higher degree of perceived participation benefits (adjusted odds ratio [aOR] 1.873; 95% CI 1.274-2.755; P=.001) were more willing to participate. In contrast, participants who had increased concerns about app-based clinical interaction and e-prescription (aOR 0.610; 95% CI 0.445-0.838; P=.002) and those who had a higher degree of perceived risks of participating (aOR 0.731; 95% CI 0.594-0.899; P=.003) were less willing to participate. Conclusions Overall, our results indicate that mHealth app–based HIV prevention programs are acceptable for future research on Malaysian MSM. The findings further highlighted the role of privacy and confidentiality, as well as the associated risks and benefits associated with participation in such a program. Given the ever-evolving nature of such technological platforms and the complex ethical–legal landscape, such platforms must be safe and secure to ensure widespread public trust and uptake.


2021 ◽  
Author(s):  
Roman Shrestha ◽  
Celia Fisher ◽  
Jeffrey A Wickersham ◽  
Antoine Khati ◽  
Rayne Kim ◽  
...  

BACKGROUND The use of mobile health (mHealth), including smartphone apps, can improve the HIV prevention cascade for key populations such as men who have sex with men (MSM). In Malaysia, where stigma and discrimination toward MSM are high, the mHealth platform has the potential to open new frontiers for HIV prevention efforts. However, little guidance is available to inform researchers about privacy and confidentiality concerns unique to the development and implementation of app-based HIV prevention programs. OBJECTIVE Given the lack of empirical data in this area, we aim to understand the privacy and confidentiality concerns associated with participation in a hypothetical app-based research study for HIV prevention efforts. METHODS A cross-sectional, web-based survey was conducted between June and July 2020 among 355 Malaysian MSM. The survey included demographic and sexual health questions and a series of short videos describing a hypothetical app-based HIV prevention program, followed by questions related to privacy and confidentiality concerns in each step of the app-based program (ie, recruitment, clinical interaction, risk assessment, and weekly reminder). Multivariable logistic regression models were used to identify the correlates of willingness to use such an app-based program. RESULTS Most of the participants (266/355, 74.9%) indicated their willingness to participate in a hypothetical mHealth app–based HIV prevention program. Participants expressed concerns about privacy, confidentiality, data security, and risks and benefits of participating in all stages of the app-based HIV research process. Multivariate analyses indicated that participants who had a higher degree of perceived participation benefits (adjusted odds ratio [aOR] 1.873; 95% CI 1.274-2.755; <i>P</i>=.001) were more willing to participate. In contrast, participants who had increased concerns about app-based clinical interaction and e-prescription (aOR 0.610; 95% CI 0.445-0.838; <i>P</i>=.002) and those who had a higher degree of perceived risks of participating (aOR 0.731; 95% CI 0.594-0.899; <i>P</i>=.003) were less willing to participate. CONCLUSIONS Overall, our results indicate that mHealth app–based HIV prevention programs are acceptable for future research on Malaysian MSM. The findings further highlighted the role of privacy and confidentiality, as well as the associated risks and benefits associated with participation in such a program. Given the ever-evolving nature of such technological platforms and the complex ethical–legal landscape, such platforms must be safe and secure to ensure widespread public trust and uptake.


Author(s):  
Gianluca Voglino ◽  
Maria Rosaria Gualano ◽  
Stefano Rousset ◽  
Pietro Forghieri ◽  
Isabella Fraire ◽  
...  

Background: Pre-exposure prophylaxis (PrEP) is suitable for high human immunodeficiency virus (HIV)-infection risk people, foremost among whom are males who have sex with other males (MSM). This study evaluated knowledge, attitudes and practices regarding PrEP in a sample of Italian MSM, in order to hypothesize strategies to implement PrEP awareness and use. No previous study has assessed this issue; Methods: An online survey was given to an opportunistic sample of Italian MSM. The questionnaire investigated sexual behaviour and habits, HIV/acquired immune deficiency syndrome (AIDS) knowledge and PrEP awareness, attitudes and practices. Univariable and multivariable logistic regressions were conducted to identify factors associated with PrEP knowledge; Results: A total of 196 MSM participated in this survey. Overall data showed that 87.2% of participants knew what PrEP is, but only 7.5% have ever used it. The main reason for not using PrEP was the cost of the therapy (26.9%). The principal source of PrEP information was the Internet (68.4%). Being regularly tested for HIV was significantly associated with PrEP knowledge (adjusted odds ratio (AdjOR) = 3.16; confidence interval (CI) = 1.06–9.29); Conclusions: Knowledge regarding PrEP was well established, but PrEP use was not equally widespread. It is necessary to improve research on PrEP usage in order to PrEP access to be granted.


2016 ◽  
Vol 46 (5) ◽  
pp. 1393-1409 ◽  
Author(s):  
Kathryn Macapagal ◽  
Ryan Coventry ◽  
Miriam R. Arbeit ◽  
Celia B. Fisher ◽  
Brian Mustanski

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