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Institute Fellows

Links to the research ethics projects and publications from the current fellows and alumni of the Fordham University HIV/Drug Abuse Prevention Research Ethics Training Institute are below. Projects cover important reserch areas such as HIV/AIDS and addiction research, treatment and prevention among sexual/gender and racial minorities and other vulnerable populations on topics including: stigma, trust/mistrust; incentives, informed consent, mHealth, sex work, risks/benefits.

Chai peter r md 76 2PETER CHAI, MD

Assistant Professor 
Emergency Medicine and Medical Toxicology
Brigham and Women's Hospital/Harvard Medical School

Background
Dr. Peter R Chai is an assistant professor of emergency medicine and medical toxicology at Brigham and Women’s Hospital/Harvard Medical School, and affiliate research scholar at the Koch Institute for Integrated Cancer Research at the Massachusetts Institute of Technology, and The Fenway Institute. His work surrounding ingestible, injectable and implantable robotic systems has been featured as a top innovation of 2021 by Popular Science, nominated for the STAT news madness challenge, and nominated as one of the top innovative concepts by the American Society of Mechanical Engineering. Specifically, Dr. Chai is interested in applying ingestible electronic sensor systems to understand medication adherence in the context of substance use and HIV treatment/prevention. His work in developing ingestible sensors and their overlying behavioral interventions as closed loop systems to measure, reinforce and provide tools for PrEP and ART adherence has been funded by the National Institutes of Health and industry partners.

Title of Mentored Research Project (MRP)
Facilitators and barriers to research assessing the use of ingestible sensors to measure PrEP adherence research among MSM with substance use disorder (TechPrEP)

Abstract
Digital pill systems (DPS) comprised of an ingestible radiofrequency sensor integrated into a gelatin capsule overencapsulating oral pharmacotherapy for HIV pre-expsoure prophylaxis (PrEP) directly measures PrEP adherence. This real-time ingestion data leads to discovery of insights around context and interventions that address PrEP adherence. For men who have sex with men (MSM) with substance use disorders, DPS may provide a tool that enhances PrEP adherence. Despite the promise of DPS, key concerns remain around the optimal design of research studies that leverage the DPS as an adherence monitoring tool. Specifically, the interpretation of DPS adherence data and methods to ethically describe research studies to potential participants remain unknown. This mentored research program will conduct a quantitative survey to assess facilitators and barriers for MSM who use substances to utilize a DPS in PrEP adherence intervention research.

Hood kristina 1KRISTINA HOOD, PHD

Assistant Professor
Department of Psychology
Virginia Commonwealth University

Background
Dr. Kristina Hood is a health psychologist with a background in social psychology. She holds a PhD in Psychology with specific training in implementation science, qualitative and mixed method research design, and measurement and intervention development. Dr. Hood’s research focuses on sexual and reproductive health outcomes among BIPOC folx and rural communities. She works with rural communities on the dissemination and implementation of community-based HIV interventions among Black women and couples. A central research aim of her work has been to find innovative ways to disseminate persuasive health messages and implement HIV interventions, thus increasing the scope of prevention efforts.  To achieve this aim, Dr. Hood has been conducting grant funded, community-based interventions (NIMH, NIDA) to increase access to HIV prevention resources and care among Black women residing in rural areas. In her work, Dr. Hood uses various methods to implement and adapt evidence-based interventions, conduct assessments of fidelity, and supervise and train facilitators to deliver HIV prevention programming to BIPOC communities. One of the unique contributions of Dr. Hood’s work is the use of technology to promote health messages and interventions that are culturally relevant and demonstrated effective to rural and underserved Black communities. This work has involved the development and dissemination of HIV prevention messages through social media and other web-based tools. Dr. Hood’s work also examines stigma, discrimination, consent, and survivorship influence on sexual health and wellness. One of Dr. Hood’s research goals is to promote sexual and reproductive health equity using an intersectional lens.

Title of Mentored Research Project (MRP)
Ethical Considerations of m-Health couples-based HIV self-testing and counseling in the South

Abstract
Racial disparities that exist in HIV infection rates cannot be fully explained by individual-level risk behaviors. Web-based adaptations of the Couples HIV Testing and Counseling (CHTC) are ideally suited for rural African American (AA) communities and other communities who have higher levels of medical mistrust due to historical and current treatment within the healthcare system. There are a number of ethical issues that arise when adapting a web-based couples’ intervention where both partners are involved during the recruitment, informed consent, counseling, HIV testing, and treatment referral phases of an RCT. Some ethical issues include coercion related to recruitment and informed consent; the allocation of incentives; partner safety when sharing HIV testing result; confidentiality related to mobile phone security; medical mistrust, therapeutic and preventive misconception. To address these ethical concerns and better inform the adaptation of a web-version of CHTC for AA rural heterosexual couples the purpose of this study is to examine participant perspectives on ethical issues surrounding implementation of an RCT assessing the CTHC for AA partnerships living in the rural south using an m-health platform and HIV self-testing.

Headshot Matthew MurphyMATTHEW MURPHY, MD

Assistant Professor
Medicine and Behavioral and Social Sciences
Brown University

Background
Dr. Matthew Murphy is an Assistant Professor of Medicine and of Behavioral and Social Sciences. Additionally, he is Medical Director of Open Door Health, an initiative of the Rhode Island Public Health Institute, and Rhode Island's first comprehensive primary care clinic dedicated to meeting the needs of the state's LGBTQ+ population. Dr. Murphy is also a staff physician at the Rhode Island Department of Corrections where he manages a number of population health programs including HIV prevention programming, Hepatitis C treatment and gender affirming care. His research interest align with his clinical work and focus on reducing health disparities among marginalized populations. His focus has been on developing evidence based interventions to prevent HIV transmission among sexual, gender, racial and ethnic minority populations as well as individuals impacted by incarcerated and substance use disorders. Dr. Murphy also has significant experience working with vulnerable populations globally. He speaks Spanish, French and Arabic. He was a Fulbright research fellow in Morocco where he conducted descriptive analyses of the country's national HIV program. He was an Erasmus Mundus fellow and completed the European Masters of Public Health in Spanish at the Andalucian School of Public Health in Granada, Spain and defended his Master's thesis on global health system reform in French at France’s Ecole des Hautes Etudes en Sante Public. He has worked for the WHO in Geneva, Switzerland in their HIV Department. He has also worked with the WHO collaborating center for Integrated People Centered Health Services and the Pan American Health Organization in their Special Program on Health Equity and Sustainable Development. He has co-authored a number of publications in high impact journals including the Lancet, the Bulletin of the WHO and the American Journal of Public Health among others (https://www.ncbi.nlm.nih.gov/myncbi/1j7zdT3kvftgcY/bibliography/public/) and has received recognition in the form of national awards including from the US National Public Health Service and the American Medical Association.

Title of Mentored Research Project (MRP)
Developing an ethical framework for the recruitment of people who inject drugs experiencing incarceration in HIV prevention research

Abstract
People who inject drugs (PWID) are disproportionately impacted by the HIV epidemic and by incarceration. During the period immediately after reentry into the community from incarceration, individuals including PWID are at an even greater risk of HIV acquisition. Interventions to prevent HIV acquisition, including the use of preexposure prophylaxis (PrEP) during the period post-release, are a promising yet understudied approach to preventing HIV acquisition. In order to improve our understanding of successfully promoting PrEP use for this uniquely vulnerable population, conducting ethically grounded research is crucial. This study aims to characterize potential approaches to recruit, enroll and reimburse individuals for participation in research activities while incarcerated at the Rhode Island Department of Corrections by conducting interviews with stakeholders in the criminal justice system. We will then explore ethical considerations related to their use, such as undue influence and coercion, during interviews with stakeholders as well as with PWID experiencing incarceration.   

05 Yerina ranjit 3YERINA RANJIT, PHD

Assistant Professor
Department of Communication
University of Missouri, Columbia

Background
Dr. Yerina S. Ranjit is an assistant professor at the department of communication at the University of Missouri, Columbia. Dr. Ranjit’s research program lies at the intersection of communication, digital technology and mHealth, HIV, and substance use. In public health, her line of inquiry has been to understand the prevalence of enabling and disabling factors of HIV among the most marginalized populations, both in the national and international contexts. Dr. Ranjit’s research has involved assessing prevalence of HIV and sexually transmitted infections (STIs) among incarcerated women in Eastern Europe and Central Asia, and other at-risk populations in Malaysia, Nepal and Peru. In the U.S., she has conducted research to assess feasibility and acceptability of digital technology for anti-retroviral therapy (ART) adherence among people with HIV who use cocaine, and the role of social media on Pre-exposure Prophylaxis (PrEP) uptake among men who have sex with men. As a communication scholar, Dr. Ranjit focuses on behavior change communication. She is interested in the role of mediated communication in improving health in the underserved populations. Dr. Ranjit has been involved in designing experimental studies to test the effect of media messages on health behaviors; conducting surveys to understand the influences of media and interpersonal communication on risk perceptions, and behavioral outcomes; and creating communication interventions to improve health. Besides HIV, Dr. Ranjit’s research has focused on other health contexts such as COVID-19 protection behaviors, mental health outcomes post-disasters, traffic accidents in the global south, and tobacco use among youth, to name a few. Dr. Ranjit’s work has been published in Journal of Health CommunicationAIDS and BehaviorJournal of Computer Mediated CommunicationInternational Journal of Disaster Risk Reduction, and has presented her work at national and international conferences.

Dr. Ranjit teaches courses in health communication at the University of Missouri-Columbia.

Title of Mentored Research Project (MRP)
Risk Perception of Mobile Phone Use and Privacy Management Strategies for HIV Prevention among Female Sex Workers in Nepal

Abstract
Female sex workers (FSWs) in Nepal continue to disproportionately experience HIV risk.This study aims to understand perceptions of privacy concerns and risks associated with mobile phones use for mHealth interventions in this population, and to understand socially and culturally acceptable strategies FSWs use to manage these risks. We also aim to assess the prevalence of the mobile phone related perceived risks, concerns, and privacy management strategies and their relationship with health care utilization. This study will recruit women 18 and above who report engaging in sex work. We will conduct 30 in-depth interviews and a survey among 200 FSWs. Qualitative data will undergo thematic analysis. Descriptive and associative analyses will be conducted for the quantitative data. This study will inform the development a training module to educate FSWs about privacy management strategies important for an HIV/STI prevention mHealth study. The training will also ensure that women understand the risk and benefits of participating in such a study, which will set precedence for conducting ethically responsible HIV research in Nepal and possibly the region.

C schairer photo 2021aCINDY SCHAIRER, PHD

Project Scientist
Herbert Wertheim School of Public Health and Human Longevity Science
University of California, San Diego

Background
Dr. Cindy Schairer is a sociologist who studies the social dimensions of emerging science and technology in medicine and public health. Prior to her graduate training, she assisted in research on stigma and genetics at the University of Pennsylvania’s Center for Bioethics. She earned her Ph.D. from the Department of Sociology and Science Studies Program at University of California, San Diego (UCSD) in 2014, completing a dissertation on users of artificial limbs. During her postdoctoral training at the UCSD School of Medicine, she led qualitative research for projects focused on the ethics of HIV molecular epidemiology, approaches to research ethics education, and public engagement on gene drive mosquitoes for vector control. Cindy is an expert qualitative researcher, specializing in consensus coding and interpretive text analysis. She is especially interested in exploring and developing novel approaches to computer-assisted text analysis and mixed methods. Her current projects include an NIH/NCATS-funded project to develop a framework for incorporating public engagement throughout the development of genetically engineered mosquitoes and an NSF-funded project to cultivate cultures of ethics in engineering education. She looks forward to developing novel methods for collecting and analyzing online focus group data in her preliminary research into attitudes toward privacy and molecular epidemiology among public health students. Cindy is a mother, spouse, sister, and aunt. In addition to her intellectual work, she volunteers, sings, and practices Iyengar yoga.

Title of Mentored Research Project (MRP)
Responses of Master of Public Health students to ethical challenges related to molecular surveillance of HIV

Abstract
Surveillance of communicable disease is a cornerstone of public health practice. However, responsible surveillance requires a delicate balance between protecting the public’s health and protecting individuals’ private information. As the development of techniques that combine artificial intelligence with surveillance will outpace the adoption of new privacy policies, professionals will be called to recognize and articulate risks and appropriately balance these with benefits for public health. This project will examine how Master of Public Health (MPH) students recognize and respond to ethical challenges related to the surveillance of HIV and how this may relate to personal styles regarding privacy and individualism vs. collectivism. Using the Remesh platform, up to 400 MPH students in the United States will engage in a real-time interactive discussion about current and potential uses of HIV molecular surveillance. Analysis will examine common concerns and identify blind spots among the future public health workforce.

Britt SkaathunBRITT SKAATHUN, PHD

Assistant Professor
Division of Infectious Diseases and Global Public Health
Department of Medicine
University of California, San Diego 

Background
Dr. Britt Skaathun (she/her) is an Assistant Professor in the Division of Infectious Diseases and Global Public Health, Department of Medicine at the University of California, San Diego (UCSD). Her research uses a combination of social network analysis, epidemiology, and epidemic modeling methods to produce evidence-based results that inform intervention and policy for infectious disease prevention and control. She earned her MPH in epidemiology from the University of Illinois-Chicago, and her doctoral degree in epidemiology from the University of Chicago. She is currently supported by a NIDA Mentored Research Scientist Development (K01) Award to develop methods to better understand the complex and overlapping social and molecular network dynamics involved in HIV transmission.

Title of Mentored Research Project (MRP)
Ethics Issues in HIV Social Network Research Involving Persons Who Use Drugs

Abstract
The construction of social networks in the context of HIV relies on sexual and drug use information about each network member provided by the primary participant. Consequently, social network members are considered secondary subjects of the research. Currently, there are no guidelines around ensuring the risks and benefits are being comprehended by participants, and communities are not engaged in the development of the consent process. This study will gather input from the community on perceived risks and benefits of participating in social network research (SNR) studies, and their perspectives on ideal consent language. Between 30-40 men who have sex with men (MSM) and transgender women who use drugs, age 18+ will be interviewed, as they are heavily impacted by HIV in the U.S. and face stigma from the medical community. Results will contribute to future research on establishing guidelines for an iterative, community-driven consent process that explicitly addresses risks unique to SNR. 

Sameena AzharSAMEENA AZHAR, PHD, MSW

Assistant Professor
Graduate School of Social Service
Fordham University
New York, New York

Background
Sameena Azhar has more than 15 years of clinical and research experience in the fields of mental health, substance abuse and HIV. For her dissertation research, Sameena conducted a mixed methods study of people living with HIV in Hyderabad, India. Over the course of three years of fieldwork, she examined the intersections between HIV stigma, gender and depression among cisgender women and hijra/third gender people with HIV. Her research has been funded through the Council on Social Work Education's Minority Fellowship Program, the University of Chicago's Center for the Study of Gender and Sexuality, the Foreign Language and Area Studies Fellowship (FLAS) in Urdu through the U.S. Department of Education, Ford Foundation, and the HIV and Drug Abuse Prevention Research Ethics (RETI) Training Institute at Fordham University. Sameena is beginning an exploratory research project on cisgender female sex workers and injection drug users in Sikkim in northeastern India. She is also currently working on a social media analysis of tweets under the #ThisIs2016 hashtag, which has archived more than 5,000 tweets of experiences of microaggression and prejudice against Asian Americans. Sameena also plays jazz piano and grows orchids.

Title of Mentored Research Project (MRP)
Long-acting injectable PrEP research trials for MSM and transgender women of color

Abstract
We collected responses from sexually active MSM, transgender women and gender-nonconforming people of color through an anonymous, web-based survey (N=216) to understand the facilitators and barriers to research participation in a hypothetical LAI PrEP trial. In adjusted multiple linear regression models, the following items were found to be significantly associated with research participation likelihood: ever participated in an HIV research study; comfort with taking a pill daily; comfort with providing a urine sample; and concerns over potential side effects of the shot. Asians were more concerned about others knowing they were being recruited compared to Black and Latinx respondents (F2, 216=3.98; p<0.05). Asian respondents were also less comfortable with being recruited at an organization that serves communities of color (F2, 216=5.10; p<0.05) than Black and Latinx respondents. Cisgender respondents were more comfortable with being recruited by a friend or colleague than transgender/gender-nonconforming respondents (F1,215=4.8; p<0.05).

Derek DangerfieldDEREK DANGERFIELD, PHD

Assistant Professor
School of Nursing
Johns Hopkins University
Baltimore, Maryland

Background
Derek Dangerfield’s research targets ways to reduce HIV/STIs and promote sexual health for sexual minority men. His expertise includes latent variable modeling, qualitative methodology, and Life Course theoretical approaches for HIV prevention. Dr. Dangerfield received his undergraduate training in sociology from Georgetown University and his PhD in preventive medicine at the University of Southern California Keck School of Medicine. His work has been supported by the NIH, the National Science Foundation, and the Johns Hopkins Center for AIDS Research. Currently, Dr. Dangerfield is leading an intervention to increase PrEP initiation and a qualitative study to identify HIV treatment adherence strategies among black men who have sex with men in Baltimore and Los Angeles.

Title of Mentored Research Project (MRP)
Identifying ethical and culturally responsive activities to improve PrEP research participation among Black sexual minority men

Abstract
Pre-exposure prophylaxis (PrEP) substantially reduces risk of HIV infection. Tele-health interventions could improve PrEP initiation and adherence for high incidence groups such as Black sexual minority men (BSMM). However, BSMM remain underrepresented in clinical trials and culturally responsive ways to improve PrEP tele-health trial participation among BSMM is needed. To fill this gap, this study identified ethical and culturally responsive study activities to improve PrEP tele-health clinical trials participation among BSMM. Data come from seven virtual, synchronous focus groups among 28 BSMM ages 18-34 were conducted from April to August 2020 to identify culturally responsive research activities to improve PrEP clinical trial research participation. Focus groups included a brief survey followed distributed online via Qualtrics™ followed by a virtual, synchronous focus group conducted via Zoom lasting between 50 and 75 minutes. Focus groups were stratified by age (18-24 vs 25-34) and outlined the components of an example PrEP tele-health randomized controlled trial and probed on domains of the study design- research motivations, study funding, recruitment activities, informed consent, randomization, follow-up, and end of the study activities. Participants were asked targeted questions regarding the ethics and trustworthiness of the study and ways that researchers could gain their trust in the PrEP tele-health trial along the protocol. Focus groups resulted in 2 groups of 18-24 year olds and 5 groups of 25-35 year olds. The average age of participants was 27.2 years (SD 4.4). Ten (38.4) reported a bachelor’s degree was their highest education completed; 21% reported some graduate degree or higher. Most reported working full-time (57.1%) and being single or not in a committed relationship (75%). Most (85.7) reported using at least one drug before sex in the 6 months prior to study. Everyone reported ever hearing about PrEP and 35% were current PrEP users. Overall, focus groups yielded themes related to how researcher intentions, study funding, recruitment activities, informed consent details, randomization, and study team interactions during and after during the study impact trust and participation. Medical/research mistrust persists among BSMM. Given the salience of medical mistrust, future studies should test the relative impact of implementing findings on research participation in a PrEP tele-health clinical trial.

MRP Publications
Dangerfield Ii, D. T., Wylie, C., & Anderson, J. N. (2021). Conducting Virtual, Synchronous Focus Groups Among Black Sexual Minority Men: Qualitative Study. JMIR public health and surveillance, 7(2), e22980. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7899800/

Étienne MeunierÉTIENNE MEUNIER, PHD

Associate Research Scientist
Mailman School of Public Health, Sociomedical Sciences
Columbia University
New York, New York

Background
Étienne Meunier, PhD, is a sociologist who conducts research on the sexual cultures and sexual health of gay male communities. Dr. Meunier has published ethnographic, qualitative, and quantitative research on the impact of structural, contextual, and cultural factors on sexuality. His research on group sexual behavior has shown how public health policies in New York City have pushed gay male public sex venues (such as bathhouses) into clandestinity, creating new spaces and new forms of social-sexual practices that present both opportunities and challenges for sexual-health promotion. Dr. Meunier has conducted a harm-reduction training program for male sex workers in NYC and is currently coordinating an NIH-funded study exploring the risk-taking behaviors of men who find transactional sex partners online. He has also contributed work on HIV-related, NIH-funded studies with diverse populations including, for instance, HIV-affected heterosexual couples, HIV-positive crack-cocaine users, non-gay-identified bisexual men, and heterosexual men and women who find sex partners online. Dr. Meunier's research has been published in English and French in journals such as The Journal of Sex Research and Archives of Sexual Behavior. His research on group sex has been funded by the Fonds de recherche du Quebec - Social & Culture and the Desjardins Foundation in Quebec.

Title of Mentored Research Project (MRP)
Acceptability and Feasibility of HIV/STI Prevention Research with Men and Transgender People Who Attend Collective Sex Environments

Abstract
Collective sex venues (places where people have sex in groups or in the presence of others, such as bathhouses or sex clubs) are locations where SARS-CoV-2 transmission is likely to occur. We conducted an online survey to examine the impact of the COVID-19 pandemic among 342 sexual and gender minority (SGM) individuals who had attended collective sex venues (CSV) in New York City (NYC) in the prior year. Almost 1 in 10 (9.9%) participants reported having received a positive test for SARS-CoV-2 infection or antibodies. Although a minority (27.5%) of participants reported being comfortable attending a CSV during the COVID-19 pandemic, multivariable ordinal logistic regression found that willingness was higher among participants who had taken the survey later in the pandemic (aOR = 2.90, CI95% 1.90 to 4.43), who attended CSV at higher frequencies (aOR = 1.94, CI95% 1.26 to 2.99), who used substances at CSV (aOR = 1.98, CI95% 1.22 to 3.23), and who had tested positive for SARS-CoV-2 infection or antibodies (aOR = 2.27, CI95% 1.17 to 4.39). In open survey answers, participants described reasons for or against attending CSV during the pandemic, as well as risk reduction strategies that would make them more comfortable attending (e.g., screening for test results, doing temperature checks, holding outdoor events, or restricting events to lower risk sexual practices). SGM individuals who attend CSV might be at increased risk for COVID-19. Public health officials should provide CSV organizers and attendees with guidelines on how to prevent or minimize transmission risk in the context of pandemics such as COVID-19.

MRP Publications
Meunier, É., Sundelson, A. E., Tellone, S., Alohan, D., Fisher, C. B., & Grov, C. (2021). Willingness to Attend Sex Venues in the Context of the COVID-19 Pandemic in New York City: Results from an Online Survey with Sexual and Gender Minority Individuals. Journal of urban health : bulletin of the New York Academy of Medicine, 1–12. Advance online publication. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8095220/

Roman ShresthaROMAN SHRESTHA, PHD, MPH

Assistant Professor
Department of Allied Health Sciences
University of Connecticut

Background
Dr. Roman Shrestha is an Assistant Professor in the Department of Allied Health Services at the University of Connectivut. He holds a Master in Public Health (2013) and PhD in Public Health (2017) and completed a year of postdoctoral training (2018) at the University of Connecticut. Roman's research primarily involves enhancing the design, delivery, and placement of HIV prevention interventions that target high-risk underserved populations, and have conducted research in a range of settings, including community and healthcare, addiction treatment, and criminal justice settings, both domestically and internationally. Specifically, his interdisciplinary line of research involves examining health-related behaviors that contribute to the disproportionate burden of syndemic health issues, comprising addiction, HIV, and mental illness, that have profound implications for HIV prevention efforts. He is particularly passionate about translational research that enhances the continuum of evidence-based interventions to maximize community impact, with implications for social and health policy. As such, his work contributes to reducing the HIV epidemic that disproportionately affects socioeconomically disadvantaged (i.e., drug users), and more recently among sexual minority group (i.e., men who have sex with men or ‘MSM’). He has been involved in a number of NIDA- and CDC-funded research projects that deal with HIV risk reduction among priority populations within community-based, clinical, and criminal justice settings. Reflecting his research leadership and broad interests, Roman has published widely across a range of topics and in esteemed peer-reviewed journals.

Title of Mentored Research Project (MRP)
Exploring Ethical Concerns Related to Participation in a Smartphone App-Based HIV Prevention Reseach among Men who Have Sex with Men in Malaysia

Bonner RETI ethicsCOURTNEY P. BONNER, PHD

Research Psychologist
Substance Use, Gender, and Applied Research (SUGAR) Program
RTI International

Background
Dr. Courtney Peasant Bonner is a research psychologist in RTI’s Substance Use, Gender, and Applied Research Program. Her professional experiences include conducting community-based participatory research to examine health disparities among vulnerable populations. Currently, her research seeks to understand the impact of the intersection of gender-based violence, substance use, and mental health on sexual risk behavior to reduce health disparities among vulnerable women and children. She also specializes in developing cross-sector collaborations to develop structural and sustainable sexual health interventions.

Title of Mentored Research Project (MRP)
Expanding HIV Testing and Prevention to Reach Vulnerable Young Women

Abstract
South Africa has one of the highest incidence of HIV among adolescent girls and young women (AGYW), ages 15-24, in the world. Research is needed to reduce HIV risk among AGYW, but federal regulations state that the age of consent for research purposes is 18 or older. This poses significant challenges to various stages of the research process and may limit the impact of HIV prevention research among those most vulnerable. This study explores the actual experiences of risks and benefits among young women who participated in a brief behavioral HIV prevention trial. Participants were Black African (n = 13) and Coloured (n =18) young women who were younger than 18 at the time of enrollment into the trial, but currently 18 years of age. These young women had completed the trial and had been randomized to the intervention arm while enrolled in the trial. After consent, post-trial focus group discussions (2 with Black African young women and 2 with Coloured young women) were conducted with 31 former participants of the HIV prevention randomized trial. Focus group discussions were audio-recorded and notes were taken. Focus group discussions were transcribed and then coded by two independent coders using open coding methods. Results suggest that community recruitment procedures were experienced as confidential and respectful. The parental proxy consent process was experienced as respectful and young women identified a variety of older women to consent for them. Additionally, some young women reported that if parental consent was required that they would not participate, while others reported that they would still participate. Some young women also expressed concern that their parents would try to breach their confidentiality related to their HIV, pregnancy, and drug tests results. Young women reported initial apprehension about sharing information about their sexual behavior and substance use in the group intervention sessions. However, they also reported that rapport with research staff and study procedures contributed to them feeling more comfortable in the group sessions and that they were able to open up to the group. Young women reported that the monetary vouchers were an important incentive, however, the majority of women reported that access to non-stigmatizing HIV, pregnancy, and drug testing was more important and had a larger influence on their continued participation than the voucher. These findings suggest that the experiences of young women who enrolled in this HIV prevention trial before the age of consent (using a parental proxy consent procedure) were positive. While there are some risks, the benefits seem to outweigh these risks and thoughtful research methods may address them. Also, parental proxy consent methods may be a viable alternative to parental consent, especially in studies that are related to HIV risk among young women.

Fonner RETI ethicsVIRGINIA FONNER, PHD, MPH

Scientist I
FHI 360

Background
Dr. Ginny Fonner is an Assistant Professor at the Medical University of South Carolina College of Medicine.  She earned her M.P.H and Ph.D. in the Social and Behavioral Interventions program from the Johns Hopkins Bloomberg School of Public Health. Dr. Fonner began her career in global health as a U.S. Peace Corps Volunteer in Zambia where she served as an HIV/AIDS Community Mobilizer in a rural area for two years. Her work largely focuses on HIV prevention in low- and middle-income countries, specifically in sub-Saharan Africa. Her research interests include developing community-based interventions for HIV prevention, synthesizing research to assess intervention effectiveness through systematic reviews and meta-analysis, understanding social and behavioral aspects of biomedical interventions, integrating HIV and non-communicable disease prevention and care, and investigating gendered aspects of HIV prevention and health-related partner communication. Dr. Fonner is primarily funded through NIH (NIMH and Fogarty International Center). She is the Principal Investigator on an R21 assessing the potential for a family-based intervention for people living with HIV and a non-communicable disease (diabetes and/or hypertension) in Dar es Salaam, Tanzania.  She is also a Co-Investigator on several R01s involving HIV self-testing, pre-exposure prophylaxis (PrEP), integration of HIV and NCDs, and systematic review and meta-analyses.

Title of Mentored Research Project (MRP)
Couples' perspectives on research participation involving dyadic-based HIV prevention and care in Tanzania

Abstract
Background: A substantial number of new HIV infections in sub-Saharan Africa occur within stable couples. Biomedical prevention (pre-exposure prophylaxis, PrEP) and treatment (antiretroviral therapy, ART) can provide benefits to sexual partners and can be used to prevent infection within HIV serodiscordant couples. However, research is typically focused on individuals, not dyads, even when the intervention may directly or indirectly impact sexual partners. Gaps remain in understanding best practices for recruitment, informed consent, and intervention implementation in studies involving HIV prevention and treatment among heterosexual serodiscordant couples. This qualitative study was undertaken to understand and describe decision-making and dyadic-level influence among members of serodiscordant couples regarding (1) participation in a dyadic-based research study involving HIV self-testing and access to PrEP, and (2) utilization of PrEP and ART. Methods: This qualitative study was nested within an observational cohort study assessing the acceptability of home-based couples’ HIV self-testing and uptake of dyadic care for serodiscordant couples involving facilitated referral for HIV-positive partners and access to PrEP for HIV-negative partners. Semi-structured in-depth interviews were conducted among a subset of study participants (n = 22) as well as individuals involved in serodiscordant relationships who chose not to participate (n = 9). Interviews focused on couples’ decision-making regarding study participation and dyadic-level influence on medication use. Interviews were transcribed verbatim and translated from Kiswahili into English. Data were analyzed using thematic analysis. Results: Three major themes were identified: (1) HIV as “two people’s secret” and the elevated role of partner support in serodiscordant relationships; (2) the intersectional role of HIV-status and gender on decision-making; (3) the relational benefits of PrEP, including psychosocial benefits for the couple that extend beyond prevention. Conclusions: The study found that couples made joint decisions regarding study participation and uptake of HIVrelated medication. Relational autonomy and dyadic-level influence should be considered within research and programs involving HIV serodiscordant couples.

Hubach RETI ethicsRANDOLPH HUBACH, PHD, MPH

Associate Professor
College of Health and Human Sciences
Purdue University

Background
Dr. Randy Hubach is an Associate Professor in the College of Health and Human Sciences at Purdue University. He holds a Ph.D. in Health Behavior from Indiana University’s School of Public Health and MPH from California State University, Fullerton. Early in his career, Dr. Hubach’s research and practice experiences included serving as PI on a federally funded community-based sexual health intervention project, developing managed care programs for local public health and mental health jurisdictions, and serving in leadership positions in multiple community health coalitions and planning processes. As a behavioral scientist and public health researcher, he has gained a practical understanding of the challenges associated with the delivery of public health programs that are scientifically sound and responsive to the needs of diverse communities.

Dr. Hubach’s research interests include using community engaged principles to address sexuality-related health disparities, sexual behavior, LGBT population health, and HIV/AIDS within urban and rural communities. Although there is an increased utilization of electronic (online and mobile) resources to conduct behavioral research, there is a dearth of evidence evaluating the ethical implication of integrating such technology into behavioral risk studies of rural men who have sex with men (MSM). In an effort to maximize the HIV care continuum within rural areas, Dr. Hubach seeks to enhance behavioral research to account for ethical considerations. This includes identifying ethical concerns of rural MSM related to the participation in electronic daily diary studies which include event-level monitoring of sexual partner-seeking, sexual event, and substance use behaviors.

Title of Mentored Research Project (MRP)
Assessing the ethical concerns for participation in ecologic momentary assessment (EMA) studies in a sample of rural men who have sex with men (MSM)

Abstract
Although men who have sex with men (MSM) within rural communities are disproportionately impacted by HIV, limited HIV research and programmatic resources are directed to these communities within the U.S. There is a need for improved behavioral data collection methods to obtain more detailed information on the relationship between rural environments, sexual behavior, and substance use. Utilization of mobile health (mHealth) technologies, such as ecologic momentary assessment (EMA), has been advocated for; however, limited research has evaluated its utility among rural MSM. Forty MSM residing in rural Oklahoma were recruited to complete in-depth interviews related to participating online/mobile-based HIV prevention research. Men described a willingness to participate in HIV and substance use studies that use EMA methodologies for data collection; however, they raised various research-related concerns. In particular, participants indicated potential privacy and confidentiality concerns related to the use of the mobile technology-based EMA in public and the storage of data by researchers. Given the varying degree of sexual orientation and substance use disclosure by participants, rural MSM were largely concerned with being inadvertently “outed” within their communities. Men described the various strategies they could employ to protect private information and methods to minimize research risk. Study findings suggest that EMA is an acceptable research methodology for use among rural MSM in the context of HIV and sexual health information, when privacy and confidentiality concerns are adequately addressed. Input from community members and stakeholders is necessary to identify potential areas of concerns for participants prior to data collection.

MRP Publications
Hubach, R. D., O'Neil, A., Stowe, M., Giano, Z., Curtis, B., & Fisher, C. B. (2020). Perceived Confidentiality Risks of Mobile Technology-Based Ecologic Momentary Assessment to Assess High-Risk Behaviors Among Rural Men Who Have Sex with Men. Archives of sexual behavior. Advance online publication. https://doi.org/10.1007/s10508-019-01612-x

Ryan RETI ethicsSTACY RYAN-PETTES, PHD

Assistant Professor
Department of Psychology and Neuroscience
Baylor University
Waco, Texas

Background
Dr. Stacy R. Ryan-Pettes joined Baylor University's Department of Psychology and Neuroscience in 2017 following 4 years on faculty at the Neurobehavioral Research Laboratory and Clinic within the Department of Psychiatry at UT Health San Antonio. While at UT Health San Antonio, she directed longitudinal research on the development of adolescent substance use and served as clinic director of an outpatient substance abuse treatment program for adolescents. During this time, Dr. Ryan-Pettes received a career development award to develop expertise in using mobile phone technology to deliver evidence-based interventions to adolescents with a substance use disorder.  Before this, Dr. Ryan-Pettes earned advanced degrees in clinical psychology (Ph.D.) at Emory University in Atlanta and received postdoctoral training in adolescent treatment outcome research in addiction with an emphasis on translational methods as a T32 National Institute on Drug Abuse-funded postdoctoral fellow. Dr. Ryan-Pettes is a current fellow with the prestigious Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute.

Title of Mentored Research Project (MRP)
Justice-Involved Youth and Caregiver Concerns about Consenting to Substance Use Treatment Research

Abstract
Purpose & Population
: The purpose of this study is to examine the reactions of justice-involved youth who are mandated to drug treatment and their legal guardians to a protocol of a randomized clinical trial. This study is the first to use an empirical research ethics methodology to examine ethically relevant attitudes of justice-involved youth and their caregivers to a treatment-research study. Methods: Using a mixed methods design, this ongoing study requires youth and caregivers to complete semi-structured interviews, separately, about their perceptions of a protocol detailing a randomized controlled trial, including recruitment, study design, and disclosure of information between a research team and juvenile probation. Interview questions were written to assess attitudes toward perceived risk and benefits, privacy and confidentiality, voluntariness to participate, and coercion and undue pressure. Additionally, youth and caregivers complete measures that assess their attitudes toward the juvenile justice system, mental health treatment, and researchers. Participants: The projected sample size for this study is 30 (15 caregivers and 15 youths). To date, 8 dyads and one caregiver have completed the study.  Transcripts for these participants were transcribed and coded for anticipated themes. Results: Preliminary results suggest participants perceive several risks to participating in a longitudinal treatment-research study, including significant burden, concerns of potential parent-child conflict, legal risk, and negative emotions (e.g., stress, worry, feeling overwhelmed).  Participants also perceived benefits to participation, including improved parent-child relationship and enhanced motivation and resources.  Interestingly, when participants compared the treatment conditions, benefits of the treatment as usual group were not noted but benefits of the intervention group were noted.  Instead, participants focused on the risks of being placed in the non-intervention group when knowing of the possibility to be placed in the intervention group.  Principles of therapeutic misconceptions, clinical equipoise, and justice were prominent as were themes of autonomy, freedom of choice, and fidelity. Conclusion: Preliminary results suggest common recruitment strategies may not be perceived as a risk for coercion or undue influence; families mandated to treatment may be vulnerable for therapeutic misconception and belief that one group is inferior to the other;  it may be time to reconsider RCTs as the gold standard when recruiting families mandated to treatment; it may be time to consider the “side effects” of prize-based or contingency management interventions; and as a research community, it may be time to consider giving participants more than just incentive payments for participating. Impact: This MRP will provide empirical data to guide the development of consent forms for substance use treatment research with justice-involved youth and establishing relationships with juvenile probation departments for recruitment.

Servin RETI ethicsARGENTINA SERVIN, MD, MPH

Assistant Professor
Department of Medicine, Division of Infectious Diseases and Global Public Health
University of California, San Diego
San Diego, California

Background
Argentina E. Servin, MD, MPH is an Assistant Professor in the Division of Infectious Diseases and Global Public Health, Department of Medicine at the University of California, San Diego (UCSD). Dr. Servin is a bilingual and bicultural clinician-researcher with training in preventive medicine, infectious disease and clinical epidemiology. She received a Medical Degree and Master’s in Public Health from Universidad Xochicalco in Baja California, Mexico. Additionally, Dr. Servin completed the mini residency training program at UCSD’s AIDS Education and Training Center (AETC) and a fellowship examining the intersections between HIV and Gender-Based Violence (GBV) at the London School of Hygiene and Tropical Medicine. Her work has included assessing sexual and reproductive health education and health service utilization among vulnerable underserved populations living in the U.S.-Mexico border region. For the past two years, specifically, she has focused her research on sexual violence, substance abuse and HIV/STI risk, among at-risk youth, female sex workers (FSWs), children of FSWs, and people who inject drugs (PWID) in the United States, Mexico and Central America. Dr. Servin also holds a shared appointment her alma matter, Universidad Xochicalco, where she conducts similar research and mentorship to medical students from disadvantaged backgrounds. Dr. Servin’s passion and commitment for serving those most in need has led her to also serve as a medical volunteer at UCSD Health Frontiers in Tijuana (HFiT) student-run free clinic where she provides accessible, quality healthcare for underserved communities in Mexico in a respectful environment where students from both Mexico and the U.S., patients, and community members learn from each other.

Title of Mentored Research Project (MRP)
Ethical Considerations for HIV and GBV Research: Adolescent Perspectives on Research Participation in Mexico

Abstract
Purpose: Various ethical challenges arise in conducting research with female adolescents focused on the intersection of HIV/STIs and gender-based violence (GBV), especially in low-and-middle-income countries (LMIC). While female adolescents have distinctive needs that merit special consideration as research subjects, their emotional and physical development may also place them at increased risk of research harms. The proposed study seeks to identify unrecognized or unacknowledged factors that have not been adequately considered and addressed in past research. Methods: From December 2018 to July 2019, adolescent girls (n=30) ages 16-19 that participated in a randomized control trial centered on preventing HIV/STIs and GBV were invited to participate in in-depth interviews from two community health centers in Tijuana, Mexico. Interviews were analyzed combined approach drawing on Grounded Theory and Content Analysis. Among the eighteen adolescent girls, the median age was 17.5 years, the average level of education was 7 years, the country of origin was Mexico (internal migrants south of country). The main emergent themes associated with barriers of participating in research studies include concerns regarding confidentiality, stigma or shame of the themes covered, misunderstanding of the purpose and content of the study, and limited agency to not participate. Conclusions: Adolescent perspectives are needed to inform ethical research and effective health policies and interventions focused on reducing risk for HIV/STIs and GBV in Mexico and other Latin American countries.

CookSTEPHANIE COOK, DRPH

Assistant Professor
School of Global Public Health, 
New York University
New York, New York

Background
Dr. Stephanie H. Cook aims to understand the pathways and mechanisms linking attachment, minority stress, and health among disadvantaged individuals. She examines how the inter- and intra- personal features of close relationships influence the health of racial/ethnic and sexual minorities. 

Through her development of an integrated theory of adult attachment (i.e., the development, or lack, of strong socio-emotional bonds) and minority stress (i.e., social stress experienced by individuals in minority social groups), she seeks to better understand the poor health and HIV prevention needs of disadvantaged youth transitioning into adulthood. She then utilize this theoretical framework of attachment and minority stress to inform effective prevention programs for vulnerable racial/ethnic and sexual minority youth transitioning to adulthood. As the Principal Investigator and Director of the Attachment and Health Disparities Research Lab, her team assesses the association of attachment-related functioning on health disparities among racial/ethnic and sexual minority youth. Dr. Cook is first exploring how adult attachment orientation is associated with HIV risk in a community sample of Black gay and bisexual men transitioning into adulthood. Second, she illustrates how transitions in attachment during adolescence are associated with trajectories of depression among a community based cohort sample of African-American youth. Third, she seeks to understand how adult attachment, in the context of minority stress, is associated with biomarkers of physical health. Dr. Cook  teaches Global Issues in Social and Behavioral Health and Regression and Multivariate Analysis.  At the Center for Health, Identity, Behavior, and Prevention Studies, she conducts research and has published numerous peer-reviewed articles.

Mentored Research Project (MRP) Title
Assessing Perceptions of Broad Consent Concerning Biological Specimen Collection in a Cohort of Young Sexual Minority Men

Abstract

Objectives: 1) To determine the extent to which young sexual minority men (YSMM) are comfortable with providing broad consent concerning their identifiable biological specimens to a variety of entities, including external researchers and pharmaceutical companies; and 2) to examine the relationship between mistrust based on racial/ethnic identity or sexual orientation and attitudes toward broad consent. Methods: 239 YSMM ages 24-27 were recruited from a prospective cohort study in New York City in 2018 to complete a survey assessing attitudes about the use of broad consent concerning biospecimens for secondary research. Results: Participants were most willing to provide broad consent to the researcher from the study they were enrolled in (85.3%), other researchers within the same university (82.4%), and researchers at other universities (74.5%). Participants were least willing to provide broad consent to government organizations (64.4%) and pharmaceutical companies (53.8%). Medical mistrust based on racial/ethnic identity or sexual Powered by Editorial Manager® and ProduXion Manager® from Aries Systems Corporation orientation was associated with attitudes toward the use of broad consent. Conclusions: Research institutions should consider modifying consent procedures around the use of broad consent in order

Estreet reti 1ANTHONY ESTREET, PHD

Associate Professor
School of Social Work, Master of Social Work Department
Morgan State University
Baltimore, Maryland

Background
Dr. Anthony Estreet's research focuses on the use of epidemiological methods to better understand socioeconomic and racial/ethnic inequalities within the areas of health and addictions. More specifically, understanding the risk and protective factors associated with health, mental health, substance use, and violence within the urban environment. These adverse outcomes occur disproportionately among members of minority groups and the ultimate aim of his research is to develop culturally appropriate prevention and intervention programs of demonstrated efficacy. Dr. Estreet has been involved with several research projects that have been funded by the National Institute of Drug Abuse, Department of Veterans Affairs, and Pharmaceutical companies. As a previous Clinical Director, Dr. Estreet has collaboratively worked with multi-disciplinary clinical teams to conduct research that investigates factors associated with substance use and adverse treatment related outcomes as well as to test the efficacy of interventions to reduce these factors.

Mentored Research Project (MRP) Title
Examining barriers and motivators to research participation among YBMSM HIV positive substance users

Abstract
HIV Seropositive BMSM who use illegal drugs are often recruited to participate in research studies conducted by large urban universities affiliated with medical centers. One body of research suggests that a history of medical discrimination and group stigma combined with research mistrust is a barrier to participation. Nonetheless many agree to participateand questions remain as to what motivates their participation decision. Perceptions of personal and community benefits of research may be one factor influencing agreement to participate. A second factor may be the influence of offering incentives (monetary or other gifts) for research participation or conducting recruitment or implementation at sites where individuals receive HIV medical care. Such influences can be seen as fair compensation for research participation or as a coercive influence that undermines voluntary choice. This project will examine the intersecting influences of research mistrust, perceived participation personal and group benefits, and the fair versus coercive influence of monetary and medical incentives on research participation among young black men who have sex with men.

Fielding-MillerREBECCA FIELDING-MILLER, PHD

Assistant Professor
School of Health Sciences
University of California, San Diego
San Diego, California

Background
Dr. Rebecca Fielding-Miller, is an Assistant Professor at the University of California, San Diego in the Division of Infectious Disease and Global Public Health and the Center on Gender Equity and Health. Her research examines structural drivers of HIV and gender based violence in the United States and sub-Saharan Africa with a focus on the intersection of race, gender, and economic inequality. She holds an MSPH in International Health, Social and Behavioral Interventions from the Johns Hopkins Bloomberg School of Public Health, and a PhD in Behavioral Sciences and Health Education from Emory University. She served as a Peace Corps Volunteer in South Africa from 2006-2008 and as a Fulbright Scholar in Swaziland in 2013-2014.

Mentored Research Project (MRP) Title
Emotional Distress Among Frontline Research Staff in Low Resource Setting

Abstract
HIV and substance use research frequently deals with sensitive topics. A growing body of evidence suggests that frontline researchers who elicit or process participant’s traumatic experiences are themselves at risk of developing emotional distress or secondary trauma from daily immersion in these data. This both threatens a study’s data quality and calls into question how the harms and benefits of conducting research are distributed across a study team. The MRP is an exploratory, qualitative study with 21 frontline research staff in Swaziland (qualitative interviewers, quantitative survey administrators, and transcriptionists). After conducting thematic analyses, we identified four primary themes: (1) The structural context, which influences both staff’s employment opportunities and the likelihood that an informant’s traumatic life experiences will mirror similar experiences in the staff member’s friend or family network; (2) The level of emotional labour and empathy necessary in frontline research likely create simultaneous risk; (3) Relationships are both a coping mechanism and a site of harm by the research; (4) Feeling invisible or inconsequential. Overall, informants described experiencing emotional distress due both to the content of their work – particularly study participants’ experiences of poverty and poor health with which study staff deeply empathize – as well as the structure. While not all study teams may have access to formal mental health services, several informants did recommend bringing a trained counselor in to speak study teams at least occasionally. Others recommended building time for team-building or debriefing conversations into the normal workweek, a strategy that would address both the issue of workload and could bolster the already existent strategy of relying on team members for mental health support.

Elizabeth P.ELIZABETH PASIPANODYA, PHD

Clinical Research Program Manager
Rehabilitation Research Center
Santa Clara Valley Medical Center
San Jose, California

Background
Dr. Elizabeth Pasipanodya is a clinical psychologist and behavioral medicine researcher with an interest in the promotion of well-being in the context of chronic conditions. Much of her work is oriented towards examining change over time, within-person and across individuals, and the dynamics of everyday life. To this end, her work incorporates ecological momentary assessment methods, multilevel modeling of effects, and latent variable modeling.

Mentored Research Project (MRP) Title
Exploring the Concerns of Ethnic Minority MSM living with HIV on Research Using Mobile Technology to Support Antiretroviral Therapy Adherence and Relapse Prevention in the Context of Methamphetamine Use

Abstract

Background: Methamphetamine use poses a barrier to antiretroviral therapy (ART) adherence. Black and Hispanic men who have sex with men living with HIV (PLWH) shoulder much of the health burden resulting from the methamphetamine and HIV syndemic. Smartphones are nearly ubiquitous in the USA and may be promising vehicles for delivering interventions for ART adherence and drug use cessation. However, the acceptability of using applications to collect sensitive information and deliver feedback in this population has not been adequately explored. Objective: This study examined minority PLWH’s appraisals of the risks of participating in smartphone-based research to promote ART adherence in the context of methamphetamine use and explored their views on appropriate steps to mitigate perceived risks of participation. Methods: Three focus groups were conducted among Black and Hispanic PLWH who use methamphetamine. Of the 13 participants, 5 had previously participated in a smartphone-based observational study of ART adherence and substance use. Discussants provided feedback on smartphone-based research, including receiving probes for HIV medication adherence, mood, and substance use as well as feedback on passive location-tracking for personalized messages. Transcribed audio-recordings were thematically coded and analyzed using the qualitative software MAXQDA. Results: Participants expressed confidentiality concerns related to potential unintentional disclosure of their HIV status and methamphetamine use and to possible legal consequences. They additionally expressed concerns around the invasiveness of daily assessments and the potential of methamphetamine use questions to trigger cravings. To mitigate these concerns, they suggested maintaining participant privacy by indirectly asking sensitive questions, focusing on positive behaviors (e.g., number of days sober), allowing user-initiated reporting of location to tailor messages, and ensuring adequate data protections. In addition to financial compensation, participants cited altruism (specifically, continuing a tradition of volunteerism in HIV research) as a motivator for potentially engaging in such research. Conclusions: Minority PLWH have concerns regarding the use of smartphones for ART adherence and methamphetamine sobriety intervention research. However, minority PLWH are likely to participate if studies include appropriate protections against risks to confidentiality and experimental harm and are designed to offer future benefit to themselves and other PLWH.

MRP Publications
Pasipanodya, E. C., Kohli, M., Fisher, C. B., Moore, D. J., & Curtis, B. (2020). Perceived risks and amelioration of harm in research using mobile technology to support antiretroviral therapy adherence in the context of methamphetamine use: a focus group study among minorities living with HIV. Harm reduction journal17(1), 41. https://doi.org/10.1186/s12954-020-00384-1

PhilbinMORGAN PHILBIN, PHD

Assistant Professor
Mailman School of Public Health
Columbia University
New York, New York

Background
Dr. Morgan Philbin is a social and behavioral scientist whose work explores how social-structural factors impact health outcomes for vulnerable populations, particularly sexual minority youth. Dr. Philbin completed her postdoctoral fellow in the Division of Gender, Sexuality and Health (HIV Center for Clinical and Behavioral Studies) at Columbia University. Her work has been published in several leading journals including the American Journal of Public Health and JAIDS. Her primary project is a NIDA-funded K01 that explores how state-level policies impact sexual health and substance use risk for sexual minority youth, and the factors that influence of the uptake of these policies; she is also leading an HIV Center funded pilot study that explores how state-level immigration policies influence health outcomes for Latinos. Dr. Philbin is currently a Co-Investigator on an NICHD-funded project through the Adolescent Trials Network that examines how HIV-infected youth transition to adult care; her previous work has explored factors that influence linkage to care and engagement in care for newly diagnosed HIV-positive adolescents.

Mentored Research Project (MRP) Title
Attitudes of young Black men who have sex with men (YBMSM) toward recruitment for HIV prevention studies

Abstract
Research recruitment, eligibility, and who chooses to participate shape the resulting data and knowledge, which together inform interventions, treatment, and programming. Patterns of research participation are particularly salient at this moment given emerging biomedical prevention paradigms. This paper explores the perspectives of Black and Latino young men who have sex with men (BL-YMSM) regarding research recruitment and eligibility criteria, how their experiences influence willingness to enroll in a given study, and implications for the veracity and representativeness of resulting data. We examine inclusion and recruitment as a complex assemblage, which should not be reduced to its parts. From April to July 2018, we conducted in-depth interviews with 30 BL-YMSM, ages 18–29, in New York City. Interviews were recorded, transcribed, and analyzed using the constant comparative method. Black and Latino YMSM’s responses unveiled tensions between researchers’, recruiters’, and participants’ expectations, particularly regarding eligibility criteria (e.g. age, sex frequency), assumptions about ‘risky behaviors,’ and the ‘target’ community. Men preferred peer-to-peer recruitment, noting that most approaches miss key population segments. Findings highlight the need to critically examine the selected ‘target’ community, who sees themselves as participants, and implications for data comprehensiveness and veracity. Study eligibility criteria and recruitment approaches are methodological issues that shape knowledge production and the policies and programs deployed into communities. These findings can inform how future research studies frame recruitment and eligibility in order to better meet the needs of participants and ensure future research engagement.

MRP Publications
Philpin, M.M., Guta, A., Wurtz, H., Kinnard, E.N., Bradley-Perrin, I., & Goldsamt, L. (2021). How Black and Latino young men who have sex with men in the United States experience and engage with eligibility criteria and recruitment practices: implications for the sustainability of community-based research. Critical Public Healthhttps://doi.org/10.1080/09581596.2021.1918329

John S.JOHN SAUCEDA, PHD

Assistant Professor
Department of Medicine
University of California, San Francisco
San Francisco, California

Background
Dr. John Sauceda's research blends health, clinical and quantitative psychology methods to understand and intervene on factors to address health disparities among Latinx communities impacted by HIV. His research is based on the principles of sound measurement, especially of psychological constructs and social factors measured in Spanish or for comparing outcomes across diverse populations. Dr. Sauceda's current research focuses broadly on using the Multiphase Optimization Strategy to design a study for sequencing behavioral therapies for depression to improve HIV care engagement; identifying community-level strategies to promote HIV care engagement in a Latinx-serving community-based organization; and a second line of research focusing on the social and behavioral science aspects of HIV cure research. Dr. Sauceda is also deep committed to mentoring across the pipeline, from young aspiring scholars through our NIDA-funded Summer HIV/AIDS Research Program (SHARP), up through early-career investigators in his role as Co-Director of the Gladstone-CFAR Mentoring Program.

Mentored Research Project (MRP) Title
Appraisal of risks and benefits in HIV cure studies and the role of altruism

Abstract
HIV cure research carries serious risks and negligible benefits. We investigated how participants understand these risks and what influences their willingness to participate. Through internet-based and in-person convenience sampling, 86 HIV+ participants completed an experimental survey. Participants were randomized to read a standard consent form describing a hypothetical HIV cure study or one adapted using Fuzzy Trace Theory—a decision-making model to facilitate complex information processing. We measured consent understanding and cognitive (e.g., safe/harmful) and affective (e.g., concerning, satisfying) evaluations of HIV cure research. Participants who read the adapted consent form had improved consent understanding, but only positive affective evaluations were associated with a willingness to participate. Consent processes can use decision-making theories to facilitate comprehension of study information.

MRP Publications
Sauceda, J. A., Dubé, K., Brown, B., Pérez, A. E., Rivas, C. E., Evans, D., & Fisher, C. B. (2021). Framing a Consent Form to Improve Consent Understanding and Determine How This Affects Willingness to Participate in HIV Cure Research: An Experimental Survey Study. Journal of empirical research on human research ethics : JERHRE, 16(1-2), 78–87. https://doi.org/10.1177/1556264620981205

Roberto AbadieROBERTO ABADIE, PHD

Assistant Professor
Department of Anthropology
College of Arts and Sciences
University of Nebraska-Lincoln

Background
Dr. Roberto Abadie is currently a Assistant Professor in the Department of Anthropology, University of Nebraska-Lincoln. He is an anthropologist and received his Ph. D. from the Graduate Center (CUNY) with a dissertation on a group of poor research subjects making a living by selling their bodies to test new, experimental drugs, for Big Pharma in Philadelphia. His book exploring this topic “The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects” has been published by Duke University Press. His interest on how individuals understand and deal with health risk, lead him to apply social network theory towards an understanding of how social inequalities shape risk practices among intravenous drug users in rural Puerto Rico, a topic he started exploring in his native country, Uruguay almost two decades ago.  Before coming to UNL, he spent some time at the Bioethics Program at the Mayo Clinic and the Biomedical Ethics Unit at McGill University. He has had his fifteen minutes of media attention from venues such as Time Magazine and the BBC.

Mentored Research Project (MRP) Title
Establishing Trust Among People Who Inject Drugs (PWID) Enrolled in a Community Health Study of Social Networks and Risk in Rural Puerto Rico

Abstract
The establishment of trust between researchers and participants is critical to advance HIV and HCV prevention particularly among people who inject drugs (PWID) and other marginalized populations, yet empirical research on how to establish and maintain trust in the course of community health research is lacking. This paper documents ideas about trust between research participants and researchers amongst a sub-sample of PWID who were enrolled in a large, multi-year community health study of social networks and HIV/HCV risk that was recently conducted in rural Puerto Rico. Qualitative research was nested within a multi-year Social Network and HIV/HCV Risk study involving N = 360 PWID > 18 years of age living in four small, rural Puerto Rican communities. Semi-structured interviews were conducted between March 2017 and April 2017 with a subset of 40 active PWID who had been enrolled in the parent study. Interview questions invited participants to draw upon their recent experience as research participants to better understand how PWID perceive and understand participant-researcher trust within the context of HIV/HCV-related epidemiological research. Fear of police, stigma and concerns regarding confidentiality and anonymity were identified as structural factors that could compromise participation in HIV/HCV-related research for PWID. While monetary compensation was an important motivation, participants also valued the opportunity to learn about their HIV/HCV status. During their participation in the study, gaining knowledge of safe injection practices was perceived as a valuable benefit. Participant narratives suggested that PWID may adopt an incremental and ongoing approach in their assessment of the trustworthiness of researchers, continuously assessing the extent to which they trust the research staff throughout the course of the research. Trust was initially generated through peer Respondent Driven Sampling recruitment. Research staff who maintained a presence in the community for the entire duration of the prospective study reinforced trust between participants and the research team. Although PWID face numerous structural barriers to research-related trust in HIV/HCV research, we found that using a peer-based recruitment method like RDS, and employing a research staff who are knowledgeable about the targeted population, culturally sensitive to their needs, and who maintain a long-term presence in the community may help mitigate many of these barriers. The reputation of the research is built incrementally as participants join the study. This contributes to a “street reputation” that grows as current or former participants vouch for the study. Establishing trust was identified as only the first step towards building a collaborative relationship with participants, and our findings suggest that steps to address criminalization and stigmatization also are necessary to support research trust.

MRP Publications
Abadie, R., Goldenberg, S., Welch-Lazoritz, M., & Fisher, C. B. (2018). Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research. PLoS One, 13(12). https://doi.org/10.1371/journal.pone.0208410

Abadie, R., Brown, B., & Fisher, C. B. (2019). "Money Helps": People who inject drugs and their perceptions of financial compensation and its ethical implications. Ethics & Behavior, 29(8), 607–620. https://doi.org/10.1080/10508422.2018.1535976

Suzanne Carlberg-RacichSUZANNE CARLBERG-RACICH, PHD, MSPH

Associate Professor
Department of Public Health
College of Liberal Arts and Social Sciences
DePaul University

Background
Suzanne Carlberg-Racich is an Associate Professor in the Department of Public Health at DePaul University, where she works to illuminate, contextualize, and correct social injustice among systematically disenfranchised populations. Her research examines the lived experiences of individuals who are isolated by the intersection of stigma and policy that permeates health systems, social services, and broader society. Priority populations include persons who inject drugs, those living with HIV and/or Hepatitis, pregnant women who use drugs, and individuals marginalized due to race, income, gender, sexual orientation, or other factors. In her scholarship, she is motivated by the use of community-based participatory research practices that maximize partnership, the strategic dissemination of findings to advocate for change, and the evaluation of public health interventions to establish best practices. Dr. Carlberg-Racich’s teaching employs Chicago as the wider classroom, engaging MPH students in projects with community-based agencies to acquire real-life public health experience. Her commitment to engagement both within and outside the classroom is a result of two decades of public health practice focused on improving health outcomes at the community level through direct outreach, development and implementation of interventions, and provider/clinician training. Most noteworthy is her 16 years of volunteer work collaborating with individuals at risk for HIV, Hepatitis, opioid overdose, and other drug-related harms at the Chicago Recovery Alliance, where she recently became Director of Research. A purposeful blend of scholar, practitioner, teacher and activist, Dr. Carlberg-Racich aims to work in partnership with community members to facilitate incremental movement toward health equity.

Mentored Research Project (MRP) Title
Agency in Photovoice Research: Exploring the lived experience of persons who inject drugs

Current Project Description
Photovoice collaborations are designed to promote critical consciousness and advocate for change. People who inject drugs (PWID) are systematically silenced from advocacy for fear of being “outed.” Photovoice protocols that prohibit identifying photography provide a safer alternative; however, it is not known how these protections affect participant experience. This study examined how human subjects’ protections affect PWID experience in a Photovoice research project. A purposeful sample of PWID (N = 25) was recruited from a Photovoice study and engaged in semi-structured interviews. Interview transcripts were coded and analyzed for key themes. The majority of participants understood the protections while also explaining the difficulty in achieving their vision. Creativity played a significant role in overcoming the restrictions. A vocal minority voiced strong objections to the restrictive protocol. Allowing only anonymous photography posed certain challenges, but PWID valued the inherent privacy. Creative approaches may aid in overcoming restraints and achieving a balance.

MRP Publications
Carlberg-Racich S. (2020). "Normally I Try and Capture a Moment, and With This I Had to Create a Moment": Implications of Anonymous Photography Protocols in Photovoice Research with People Who Inject Drugs. Journal of empirical research on human research ethics : JERHRE, 1556264620983139. Advance online publication. https://doi.org/10.1177/1556264620983139

ALANA J. GUNN, PHD, MPP

Assistant Professor
Criminology, Law, and Justice
University of Illinois at Chicago

Background
Alana J. Gunn received her BA from Vassar College and her MPP, AM and PhD from the University of Chicago. Before joining the faculty of the University of Illinois at Chicago, Gunn was a National Institute on Drug Abuse-funded post-doctoral fellow at the National Development and Research Institutes in New York City. Gunn has extensive experience working with incarcerated individuals in jails and under correctional community-based supervision, as well as with the agencies charged with supporting the re-entry process. Her program of research focuses on the ways in which multi-level experiences of stigmatization shape the health and well-being of women with histories of incarceration and substance use disorders. She is currently engaged in a number of projects, including a formative research study to develop a critical consciousness-informed intervention targeting women at high risk of HIV exposure. She is also writing a grant to explore the barriers, such as stigma, to black women's use of oral pre-exposure prophylaxis (PrEP).

Mentored Research Project (MRP) Title
Stigma and Ethical Concerns Related to Interviewing Women with Incarceration and Drug Use Experiences

MRP Abstract
While current ethical procedures aim to minimize risks to imprisoned individuals, there is heightened awareness of the need to protect those who participate in research post-incarceration while under community-based supervision. Formerly incarcerated women, in particular, face myriad challenges to community reintegration which also make them vulnerable participants in research. As such, this study explores how 28 formerly incarcerated Black women experience the qualitative research process. Findings revealed that women engaged in research because these contexts were viewed as therapeutic spaces for raising awareness that can help others. Moreover, the interview process allowed women to share their pasts in ways that promote their recovery from addiction. Participants also reported risks of emotional distress and fears regarding researcher stigma. The implications for trauma-informed interviewing practices underscore the need for greater considerations of the role of the researcher, research environment, and how they contribute to one’s personal recovery.

MRP Publications
Gunn, A., Hardesty, M., Overstreet, N., & Wallace, S. (2021). “Every time I tell my story I learn something new”: Voice and inclusion in research with Black women with histories of trauma, addiction and incarceration. Criminology and Criminal Justicehttps://doi.org/10.1177/17488958211005820

Alana Janell GunnKIMBERLY NELSON, PHD, MPH

Background
Dr. Kimberly Nelson earned her MPH in epidemiology from the University of Washington (UW) and a Ph.D. in clinical psychology also from UW. Following receipt of her doctoral degree in August 2014, she was awarded a NIMH-funded postdoctoral fellowship in child/adolescent bio-behavioral HIV research (PI: Brown, T32MH078788) at Rhode Island Hospital as a part of the Clinical Psychology Consortium Postdoctoral Training Program at Brown University. Having both a public health and psychology background, Dr. Nelson focuses on community- and population-level health implications while conducting individual-level behavioral research. Her research to date has primarily concentrated on psychological and structural factors associated with the transmission or acquisition of HIV among sexual and racial/ethnic minority populations, particularly among men who have sex with men (MSM). During her employment and graduate education she coordinated multiple NIH-funded HIV and substance use prevention trials targeting adult MSM (PI: Dilley, R01MH065138; PI: Dilley, R01MH073425; PI: Humfleet, P50DA009253) and conducted a two-phase, mixed-methods, NIMH-funded (F31MH088851) study on sexually explicit online media use and sexual risk-taking among adult MSM. Dr. Nelson’s current work focuses on media influences on risk behaviors among sexual minority adolescents. She is funded by a career development award from NIMH (K23MH109346) during which she will develop an online sexual health media literacy intervention to promote adolescent sexual minority males’ critical examination of online media and decrease their sexual risk-taking. Ultimately she hopes to develop HIV prevention interventions – using new and increasingly accessible and influential online media – to address disparities among sexual minority populations across key developmental periods.

Mentored Research Project (MRP) Title
Developing methods to promote the sexual health and protect the welfare of adolescent males who are interested in sex with males in the United States

Abstract
Institutional review boards (IRBs) that refuse to grant waivers of guardian permission may hinder research to inform needed online sexual health interventions for adolescent males interested in sex with males (AMSM). Information on the challenges of obtaining (or waiving) guardian permission is imperative. In June and July 2017, AMSM (N = 206; ages 14 to 17) in the United States completed an online survey on sexual behaviors, sexually explicit media use, and sexual education exposure/needs. A mixed-methods approach assessed attitudes toward guardian permission for the current survey and future online sexual health intervention research. Logistic regression models assessed differences by “outness” to a guardian. A framework matrix analysis was conducted to summarize, then aggregate, qualitative responses. Findings indicated that most AMSM would not participate if guardian permission was required (current: 83%; future: 87%). Youth who were not out were more likely to say they would not participate (current: adjusted odds ratio [AOR] = 2.8, 95% confidence interval [CI]: 1.2 to 6.8); future: AOR = 4.7, 95% CI: 1.6 to 13.5). Participants reported that guardian permission would be an invasion of their privacy, lead to involuntary outing, and endanger participants. Overall, guardian permission appears to be a barrier to AMSM participation in online sexual health research. Investigators and IRBs should consider alternative practices and policies to facilitate such research.

MRP Publications
Nelson, K. M.
, Carey, M. P., & Fisher, C. B. (2019). Is Guardian Permission a Barrier to Online Sexual Health Research Among Adolescent Males Interested in Sex With Males?. Journal of sex research56(4-5), 593–603. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6310663/

Jonathon RendinaH. JONATHON RENDINA, PHD, MPH

Senior Director of Research
Whitman-Walker Institute
Associate Research Professor
Epidemiology 
George Washington University

Background
Dr. H. Jonathon Rendina received his MPH in Biostatistics and his PhD in Social Psychology. His research primarily consists of NIH grant-funded studies focused on understanding the role of social stress in health from a biopsychosocial perspective, both within New York City and throughout the U.S. In particular, his lab's work focuses on the role of intersectional sexual minority stress in driving health disparities for sexual and gender minority (SGM) populations and the impact of stigma on the health of people living with HIV. Dr. Rendina's work relies heavily on technology-based methodologies and integrates a range of psychological, social, behavioral, neurocognitive, and biological measurements. 

Mentored Research Project (MRP) Title
Examining Privacy Concerns and Trust in the Context of Online and Mobile Research with Men who have Sex with Men

Abstract
Background: Modern research is heavily reliant on online and mobile technologies, which is particularly true among historically hard-to-reach populations such as gay, bisexual, and other men who have sex with men (GBMSM). Despite this, very little empirical research has been published on participant perspectives about issues such as privacy, trust, and data sharing. Objective: The objective of our study was to analyze data from an online sample of 11,032 GBMSM in the United States to examine their trust in and perspectives on privacy and data sharing within online and mobile research. Methods: Participants were recruited via a social networking site or sexual networking app to complete an anonymous online survey. We conducted a series of repeated measures analyses adjusted for between-person factors to examine within-person differences in the following: (1) trust for guarding personal information across different venues (eg, online research conducted by a university vs. an online search engine); (2) privacy concerns about 12 different types of data for three distinct data activities (ie, collection by app owners, anonymous selling to third parties, and anonymous sharing with researchers); and (3) willingness to share those 12 different types of data with researchers. Due to the large sample size, we primarily reported measures of effect size as evidence of clinical significance. Results: Online research was rated as most trusted and was more trusted than online and mobile technology companies, such as app owners and search engines, by magnitudes of effect that were moderate-to-large (ηpartial2=0.06-0.11). Responding about 12 different types of data, participants expressed more concerns about data being anonymously sold to third-party partners (mean 7.6, median 10.0) and fewer concerns about data being collected by the app owners (mean 5.8, median 5.0) or shared anonymously with researchers (mean 4.6, median 3.0); differences were small-to-moderate in size (ηpartial2=0.01-0.03). Furthermore, participants were most willing to share their public profile information (eg, age) with researchers but least willing to share device usage information (eg, other apps installed); the comparisons were small-to-moderate in size (ηpartial2=0.03). Conclusions: Participants reported high levels of trust in online and mobile research, which is noteworthy given recent high-profile cases of corporate and government data security breaches and privacy violations. Researchers and ethical boards should keep up with technological shifts to maintain the ability to guard privacy and confidentiality and maintain trust. There was substantial variability in privacy concerns about and willingness to share different types of data, suggesting the need to gain consent for data sharing on a specific rather than broad basis. Finally, we saw evidence of a privacy paradox, whereby participants expressed privacy concerns about the very types of data-related activities they have likely already permitted through the terms of the apps and sites they use regularly.

MRP Publications
Rendina, H.J., & Parsons, J.T. (2018). Factors associated with perceived accuracy of the Undetectable = Untransmittable slogan among men who have sex with men: Implications for messaging scale-up and implementation. Journal of the International AIDS Society, 21(1). https://doi.org/10.1002/jia2.25055

Rendina, H. J. & Mustanski, B. (2018). Privacy, trust, and data sharing in web-based and mobile research: Participant perspectives in a large nationwide sample of men who have sex with men in the United States. Journal of Medical Internet Research, 20(7), e233. https://doi.org/10.2196/jmir.9019

John, S. A., Robles, G., Starks, T. J., & Rendina, H. J. (2019). Differences Between Groups of Pre-exposure Prophylaxis (PrEP) Using Couples in HIV-Negative/Unknown Relationships. Journal of acquired immune deficiency syndromes (1999), 81(4), 419–428. https://doi.org/10.1097/QAI.0000000000002058

Antebi-Gruszka N, Talan AJ, Reisner SL, & Rendina, H.J. (2020). Sociodemographic and behavioural factors associated with testing for HIV and STIs in a US nationwide Sample of transgender men who have sex with men. Sexually Transmitted Infectionshttps://doi.org/10.1136/sextrans-2020-054474

RETI, fellowERIN BONAR, PHD

Associate Professor
Michigan Medicine, Department of Psychiatry
University of Michigan
Ann Arbor, Michigan

Background
Erin E. Bonar, Ph.D., is a licensed clinical psychologist and Associate Professor in the Department of Psychiatry as well as an Adjunct Assistant Professor in the Department of Psychology. She investigates the links between substance use and risky behaviors, particularly HIV risk behaviors, in vulnerable populations with special attention to the role of social cognitive factors.

Dr. Bonar is interested in developing and adapting interventions augmented by mHealth for prevention and treatment of substance use and related conditions. She is also involved in medical education and teaches Motivational Interviewing to medical trainees.

Mentored Research Project (MRP) Title
Emerging Adults’ Risk-Benefit Experiences with Using mHealth Technologies for Research on Drug Use and Sexual Behaviors

MRP Abstract
To inform ethical procedures for human subjects research using mobile health (mHealth), we examined perceived risks and benefits of study participation among emerging adults (= 54) with drug use who completed text message assessments of substance use and sexual behaviors. Most participants reported comfort with participation and some reported perceived benefits, such as improved relationships. Perceived risks were infrequently reported, including negative emotions and legal or financial concerns. In conclusion, participants from a vulnerable population reported few perceived harms of participation in longitudinal mHealth assessments of sensitive behaviors. Researchers should continue characterizing participants’ perspectives on ethical aspects of mHealth research.

MRP Publications
Bonar, E.E., Koocher, G.P., Benoit, M.F., Collins, R.L., Cranford, J.A., & Walton, M.A. (2017). Perceived Risks and Benefits in a Text Message Study of Substance Abuse and Sexual Behavior. Ethics and Behavior, 28(3): 218-234. https://doi.org/10.1080/10508422.2017.1293541

Faith FletcherFAITH FLETCHER, PHD

Assistant Professor
Center for Medical Ethics & Health Policy
Baylor College of Medicine

Background
Faith E. Fletcher, PhD, MA is an Assistant Professor in the Center for Medical Ethics & Health Policy at Baylor College of Medicine The overall goal of Dr. Fletcher’s research program is to develop and implement community- and clinic-based social and behavioral research to reduce HIV-related disparities among African American women. Her research is grounded in methodological and theoretical approaches from public health, bioethics, and behavioral science. Additional training offered through Fordham University’s HIV Research Ethics Training Institute has positioned her to conduct empirical research ethics studies to examine and address health disparities among HIV-positive women with respect to the ethics of research participation. In particular, Dr. Fletcher seeks to develop ethical policies and strategies to alleviate vulnerability to HIV-related stigma associated with health care setting and research study engagement. To date, Dr. Fletcher’s research has been funded through the University of Illinois at Chicago Program for Building Interdisciplinary Careers in Women's Health Research K12 Fellowship, Society of Family Planning, Center for AIDS Research, Center for Clinical and Translational Science, Kaiser Permanente Burch Minority Leadership Program, and Centers for Disease Control and Prevention Public Health Dissertation Program (R36). For her commitment to health disparities and social justice, Dr. Fletcher was a 2017 recipient of the National Minority Quality Forum’s 40 Under 40 Leaders in Minority Health Award. Her educational background includes a BS in Biology from Tuskegee University; MA in Bioethics, Humanities, and Society from Michigan State University; and PhD in Health Promotion, Education and Behavior from the University of South Carolina. Dr. Fletcher also completed a National Cancer Institute R25T-funded Postdoctoral Fellowship in the Department of Behavioral Science at The University of Texas MD Anderson Cancer Center.

Mentored Research Project (MRP) Title
Perceptions of Facilitators and Barriers to Consenting Daughters Participation in HIV Prevention Research among African American Women Living with HIV/AIDS

Abstract
African American women living with HIV (WLWH) in the U.S. South encounter heightened marginalization due to the complex intersections of race, gender, poverty, and HIV status. Social vulnerabilities experienced by individuals and communities in daily life have the potential to sharpen ethical tensions in the context of research. Thus, conducting ethical research requires attention to the contextual challenges and concerns of diverse research populations to tailor participant protections to a particular sociocultural context. Using principles from the Belmont Report, the present report draws on data from a qualitative study with 42 African American WLWH in the South by highlighting the first author's accounts of ethical challenges that emerged during data collection. Findings suggest that engaging participants in their natural environments can inform the development of ethical research strategies germane to women's lived experiences. Study findings also contribute to empirical guidance for investigators engaging marginalized populations in scientific research.

MRP Publications
Fletcher, F. E., Rice, W. S., Ingram, L. A., & Fisher, C. B. (2019). Ethical Challenges and Lessons Learned from Qualitative Research with Low-Income African American Women Living with HIV in the South. Journal of health care for the poor and underserved, 30(4S), 116–129. https://doi.org/10.1353/hpu.2019.0122

RETI, fellowJULIA LECHUGA, PHD

Assistant Professor
College of Health Sciences, Public Health Sciences
The University of Texas at El Paso
El Paso, Texas

Background
Julia Lechuga completed her PhD in psychology in 2008 from the University of Texas at El Paso and her postdoctorate in 2010 at the Medical College of Wisconsin. She is currently Associate Professor at the University of Texas at El Paso in the Department of Public Health Sciences. Dr. Lechuga’s overarching goal is to contribute to ameliorate the profound ethnic health disparities that characterize the U.S. health care system by developing, implementing and testing behavior change interventions that are culturally appropriate for ethnic minority, medically underserved population.

Mentored Research Project (MRP) Title
Benefits and barriers to continued HIV treatment for drug using individuals (largely crack cocaine) who have participated in an HIV intervention study in El Salvador

Abstract
There is limited research on the effectiveness of social network-based community-level HIV risk reduction behavioral interventions in non-injection drug users in underdeveloped countriesand the risks and benefits encountered. In addition, there is a dearth of research on participants’ expectations and motivations to participate.The purpose of the study was to retrospectively assess the research experiences of crack users who took part in such an intervention. Seventy-eight surveys and 20 in-depth interviews were conducted to assess participants’ motivations to participate, perceived drawbacks of participation, and behavior change intentions and perceived sustainability of behavior change.Participants were recruited from a larger study assessing the effectiveness of an HIV risk reduction multi-level community based intervention. Findings indicated that participants were motivated to participate for a variety of reasons including a desire to help others (altruistic motive). Participants scored higher than the midpoint of the scale regarding perceived benefits of participating.Findings indicated that participants who felt trust towards research experienced greater benefits of participation and reduced drawbacks. Furthermore, measures of structural barriers to behavior change such as stigma towards crack use significantly influenced research trust. Approximately half of participants were motivated to participate in medical treatment, which points to the importance of utilizing alternative methods of teaching potential participants about the benefits of research participation. Findings will inform the development of guidelines to inform IRB decision-making regarding the risk/benefit ratio of participation in such interventions.

RETI, fellowABBY RUDOLPH, PHD, MPH

Associate Professor
College of Public Health, Department of Epidemiology and Biostatistics
Temple University
Philadelphia, Pennsylvania

Background
Dr. Abby E. Rudolph is an Infectious Disease and Social Epidemiologist whose research incorporates social network and spatial approaches to better understand the independent and combined influence of individual, network (sociometric and egocentric), and environmental (built and social) factors on disease transmission dynamics, recruitment patterns, risk behaviors, and health service use among marginalized populations. She received her MPH from Columbia University Mailman School of Public Health in 2007 and her PhD in Epidemiology from Johns Hopkins University Bloomberg School of Public Health in 2011. Her dissertation evaluated respondent-driven sampling (RDS) with respect to its assumptions and the potential for biased measures. Since defending her dissertation, she has implemented and evaluated RDS studies conducted in a variety of different study populations and settings, including people who use drugs (PWUD), people who inject drugs (PWID), and men who have sex with men (MSM). She has also consulted on the analyses of several other projects that used RDS and other network-based recruitment strategies both domestically and internationally.

Mentored Research Project (MRP) Title
Ethical Considerations for the Collection of Spatial Data for HIV Prevention Research among Illicit Drug Users

Abstract
Background: Analyses with geographic data can be used to identify "hot spots" and "health service deserts", examine associations between proximity to services and their use, and link contextual factors with individual-level data to better understand how environmental factors influence behaviors. Technological advancements in methods for collecting this information can improve the accuracy of contextually-relevant information; however, they have outpaced the development of ethical standards and guidance, particularly for research involving populations engaging in illicit/stigmatized behaviors. Thematic analysis identified ethical considerations for collecting geographic data using different methods and the extent to which these concerns could influence study compliance and data validity. Methods: In-depth interviews with 15 Baltimore residents (6 recruited via flyers and 9 via peer-referral) reporting recent drug use explored comfort with and ethics of three methods for collecting geographic information: (1) surveys collecting self-reported addresses/cross-streets, (2) surveys using web-based maps to find/confirm locations, and (3) geographical momentary assessments (GMA), which collect spatiotemporally referenced behavioral data. Results: Survey methods for collecting geographic data (i.e., addresses/cross-streets and web-based maps) were generally acceptable; however, participants raised confidentiality concerns regarding exact addresses for illicit/stigmatized behaviors. Concerns specific to GMA included burden of carrying/safeguarding phones and responding to survey prompts, confidentiality, discomfort with being tracked, and noncompliance with study procedures. Overall, many felt that confidentiality concerns could influence the accuracy of location information collected for sensitive behaviors and study compliance Conclusions: Concerns raised by participants could result in differential study participation and/or study compliance and questionable accuracy/validity of location data for sensitive behaviors.

MRP Publications
Rudolph AE, Bazzi AR, Fish S. (2016). Ethical considerations and potential threats to validity for three methods commonly used to collect geographic information in studies among people who use drugs. Addictive Behaviors, 61: 84-90. https://doi.org/10.1016/j.addbeh.2016.05.014

Rudolph, A.E., Young, A.M., & Havens, J.R. (2017). A rural/urban comparison of privacy and confidentiality concerns associated with providing sensitive location information in epidemiologic research involving persons who use drugs. Addictive Behavior, 74: 116-111. https://doi.org/10.1016/j.addbeh.2017.06.006

Young, A.M., Rudolph, A.E. & Havens, J.R. (2018). Network-Based Research on Rural Opioid Use: an Overview of Methods and Lessons Learned. Curr HIV/AIDS Rep, 15(2):113-119. https://doi.org/10.1007/s11904-018-0391-2

Rudolph, A. E., Young, A. M., & Havens, J. R. (2020). Privacy, Confidentiality, and Safety Considerations for Conducting Geographic Momentary Assessment Studies Among Persons Who Use Drugs and Men Who Have Sex with Men. Journal of urban health: bulletin of the New York Academy of Medicine97(2), 306–316. https://doi.org/10.1007/s11524-018-0315-x

RETI, fellowARUNANSU TALUKDAR, PHD

Associate Professor of Medicine
Medical College Kolkata
Kolkata, West Bengal, India

Background
Arunansu Talukdar started his professional career as physician and got involved in caring AIDS patients. Later he obtained his PhD in Epidemiology from School of Public Health at University of California Los Angeles in 2007, focusing on sexual risk behavior and STD/HIV scenario among homeless people in Kolkata, India. He has published several articles on association of circumcision and reduced HIV acquisition, inconsistent condom use and high prevalence of STDs among homeless people. He completed WHO Fellowship in 2011 and later published articles on coping strategy, quality of life among HIV infected people. After joining Medical College Kolkata, India, he conducted a course on research methodology in STD/HIV in collaboration with Washington University. He is now guiding five MD students who are conducting research on HIV prevention and care. He hopes to develop a training centre for health research for all categories of staff.

Mentored Research Project (MRP) Title
Study of voluntariness of consent to research for female participants in Clinic-Based Intervention Research in Kolkata, India

Abstract
A core ethical principal in research is voluntary participation. Voluntariness is ensured through the informed consent process, in which research participants receive detailed information about study procedures, risks, and benefits; are informed of their rights as research participants; and are given the opportunity to decide – without penalty or coercion – whether or not to participate in a research study. Unfortunately, there are at least two potentially significant barriers to this process, many of which are apparent in the developing world. First, literacy levels (both reading levels and levels of scientific literacy required to understand the research process) are often low among resource-limited groups, thus raising questions regarding the capacity of potential research participants to understand the informed consent process. Second, cultural barriers might impact the ability of an individual to provide informed consent. For example, the informed consent process assumes that an individual makes the decision of whether or not to participate in a research project. However, in many cultures important decisions are made by other family or community members, or are made collectively. While these decision-making processes reflect community norms, they are in direct conflict with the autonomy of potential research participants that is embedded in the informed consent process. These potential barriers to informed consent can be seen in the patient population at Medical College & Hospital, Kolkata, which is located in Kolkata, India. This hospital operates a large clinic for HIV+ patients, where clinical care (including antiretroviral medication, ART) is provided free of charge. Within the hospital, medical and social science research is regularly conducted, overseen by local and state internal review boards. A research project will be conducted soon on trial of cognitive behavior therapy (CBT) for non-ART adherent patients at ART centre in collaboration with Psychiatry department. Patients who enroll in this research project will first complete an informed consent process. This proposed study will assess the degree of voluntariness of this informed consent process prior to the initiation of CBT. A community advisory board will provide input on measures and research design. Semi-structured interviews will be conducted with 60 Bengali-speaking women who have provided informed consent but not yet begun therapy. Findings will be reviewed by focus groups of women, men and link workers to help contextualize results and make recommendations to improve the informed consent process for future research studies.

RETI, fellowTHESPINA YAMANIS, PHD

Associate Professor
School of International Service
American University
Washington, D.C.

Background
Dr. Thespina "Nina" Yamanis' professional interests are in identifying the mechanisms that link social and structural conditions to health disparities and in designing community-based interventions to improve health among vulnerable groups. Her expertise is in HIV prevention for young adults and Latino immigrants, with a substantive focus on the role of social networks in health. She is currently Principal Investigator on an R21 grant from the National Institute of Mental Health to conduct a pilot social network intervention in Tanzania to reduce HIV and intimate partner violence for adolescent girls. In 2017 she was awarded a grant from the Robert Wood Johnson Foundation to examine resilience and health in immigrant communities in Washington, DC and Prince George’s County, Maryland. Dr. Yamanis has published her research in prestigious journals, including Social Science and Medicine, AIDS and Behavior, Global Public Health, PLOS NTDs (on field research findings from the Ebola outbreak in Sierra Leone), and Sociological Methods and Research. She often involves students in her research, and teaches global health at the undergraduate level and program planning at the Master's level.

Mentored Research Project (MRP) Title
Young men’s perspectives on the ethical issues of participating in a randomized controlled trial (RCT) to prevent HIV in Tanzania

Abstract 
The effectiveness of peer leaders in promoting health may depend on the position they occupy within their social networks. Using sociocentric (whole network) and behavioral data from the intervention arm of a cluster-randomized HIV prevention trial in Dar es Salaam, Tanzania, we used generalized linear models with standardized predictors to examine the association between heath leaders’ baseline structural network position (i.e., in-degree and betweenness centrality) and their 12-month self-reported (1) confidence in educating network members about HIV and gender-based violence (GBV) and (2) number of past-week conversations about HIV and GBV. As in-degree centrality increased, leaders reported fewer HIV-related conversations. As betweenness centrality increased, leaders reported greater number of conversations about GBV. Network position was not significantly associated with confidence in discussing either topic. Our results suggest that peer leaders who occupy spaces between sub-groups of network members may be more effective in engaging their peers in sensitive or controversial topics like GBV than more popular peer leaders.

MRP Publications
Balvanz, P., Yamanis, T. J., Mulawa, M. I., Mwikoko, G., Kajuna, D., Kilonzo, M. N., Kajula, L. J., Leatherman, S., & Maman, S. (2019). Microfinance and health interventions: Factors influencing loan repayment success with young men in Dar es Salaam, Tanzania. Global public health, 14(2), 254–270. https://doi.org/10.1080/17441692.2018.1501079

Mulawa, M.I., Yamanis, T.J., Kajula, L.J. et al. (2018). Structural Network Position and Performance of Health Leaders Within an HIV Prevention Trial. AIDS and Behavior. 22(9):3033-3043. https://doi.org/10.1007/s10461-018-2126-1

Stella Njuguna, HIV FellowSTELLA NJUGUNA, BPHARM, MPH

Research Officer
Kenya Medical Research Institute
Nairobi, Kenya

Background
Dr. Stella Njuguna is a Research Officer at Kenya Medical Research Institute (KEMRI). She earned her pharmacy degree from the University of Nairobi, Kenya and a MPH in Epidemiology from the University of California, Berkeley. Her main research interests include: HIV prevention care and treatment as well as socio-behavioral research especially within HIV discordant couples. Dr. Njuguna has participated in several studies in various capacities. Currently, she is a Co-Investigator for the HIV- Neurology in Kenya Study 2 (THINK-2) and a pharmacist and epidemiologist for Sustainable East Africa in Community Health (SEARCH) study. THINK-2 is a longitudinal study that aims to assess the impact of cognitive impairment on adherence to anti-retroviral therapy (ART). SEARCH project is a cluster-randomized multi-site clinical trial which aims to quantify the health, economic and education impact of early diagnosis and immediate ART treatment using a streamlined care delivery system in rural communities in East Africa. Furthermore, she has keen interest in research ethics and currently provides technical support to KEMRI’s Ethics Review Committee. Dr. Njuguna is also a member of the ADILI Taskforce Secretariat which has been mandated by the Director of KEMRI to restructure the Institute’s research and regulatory review system. She is also a production editor for the quarterly bioethics newsletter in KEMRI.

Mentored Research Project (MRP) Title
Post-trial access of Truvada® amongst HIV-1 discordant couples enrolled in the PrEP study in Kisumu, Kenya

Abstract
Purpose: Recent studies have shown that Truvada is effective in preventing HIV infections in most at risk populations. However, Truvada has not been provided to the participants who were enrolled in the Pre-Exposure Prophylaxis (PrEP) study in Kisumu, Kenya. Who is responsible for post-trial access (PTA) in this population? This is a critical ethical issue that needs to be addressed. The main goal of this study was to examine attitudes regarding post-trial access to Truvada amongst a random sample of sero-discordant couples previously enrolled in the PrEP study in Kisumu, Kenya as well as the principal investigators of the study. Study population: HIV uninfected participants in discordant relationships formerly enrolledin PrEP study, investigators of the study, and head of HIV preventative services for the Ministry of Health, Kenya. Method: Mixed methods cross-sectional study. Focus group discussions and in-depth interviews were conducted. A brief questionnaire was administered to capture data on socio-demographics and trial experiences. Results and Conclusion:A total of 40 participants were enrolled into the study, with 95% currently living with their partners. The majority of participants (60%) are inpolygamous relationships. Over half the participants (57%) fear-getting HIV infected since they are not receiving TRUVADA. From the FGD, most of the participants strongly felt that they should be receiving TRUVADA as they “risked their lives during study participation”. The government of Kenya and the sponsors should dialogue on how these drugs will be made available to the study population. Local investigators felt that the government should take up the responsibility of PrEP provision to high risk populations such as MSM, FSW and sero-discordant couples who are trying to conceive.

RETI, fellowNICOLE OVERSTREET, PHD

Assistant Professor
Department of Psychology
Clark University
Worcester, Massachusetts

Background
Dr. Nicole Overstreet earned her B.A. in psychology from Smith College and Ph.D. in social psychology from the University of Connecticut. She completed a postdoctoral fellowship at Yale University’s Center for Interdisciplinary Research on AIDS (CIRA). She joined Clark University in September 2014. Dr. Overstreet’s program of research examines sociocultural factors that contribute to mental and sexual health disparities among Black women and other marginalized groups. Her primary research examines the consequences of intimate partner violence-related stigma on health outcomes from a multi-level perspective (i.e., personal, interpersonal, structural level). She recently received funding from Fordham University’s HIV and Drug Abuse Prevention Research Ethics Training Institute, sponsored by the National Institute on Drug Abuse, to investigate the role of intersectional stigma in HIV research among HIV-infected African American women. Her second line of work focuses on the influence of societal stereotypes around race and gender on the sexual health and well-being of marginalized groups, with a particular focus on the synergistic relationship between sexual objectification and violence against women. Dr. Overstreet conducts this research using multiple methods including experiments, surveys, and qualitative interviews. Dr. Overstreet is currently teaching courses on experimental research methods and social psychology and looks forward to teaching courses related to stigma, health, and gender.

Mentored Research Project (MRP) Title
Assessing the role of stigma on women’s participation in and perceptions of intimate partner violence research

Abstract
African American women living with HIV were asked to reflect on the perceived risks and benefits of research participation after completing a study examining socially sensitive issues in their lives, including intimate partner violence (IPV) and HIV. Administration of standardized quantitative instruments yielded positive responses to the research experience. However, qualitative assessments of perceived risks and benefits revealed more nuanced responses. For example, confidentiality concerns were more prominent in open-ended responses as was participants’ positive attitudes toward monetary compensation. In addition, some women reported that study participation provided them with new insights about their experiences with IPV. Findings suggest that empirical studies on research protections involving potentially distressing and socially sensitive experiences with vulnerable populations require both quantitative and qualitative assessments of perceived risks and benefits. We discuss implications of our findings for ethics practices in trauma-related research among populations with multiple social vulnerabilities.

MRP Publications
Overstreet, N. M., Okuyan, M., & Fisher, C. B. (2018). “Perceived Risks and Benefits in IPV and HIV Research: Listening to the Voices of HIV-Positive African American Women.” Journal of Empirical Research on Human Research Ethics, 13(5):511-524. https://doi.org/10.1177/1556264618797557

ALEXIS ROTH, PHD, MPH

Associate Professor
Department of Community Health and Prevention
Dornsife School of Public Health
Drexel University

Background
Dr. Alexis Roth worked in a variety of community-based organizations prior to embarking on her graduate training. Across these positions, she worked to link individuals to sexually transmitted infection (STI) and HIV testing, medical care, and social services to decrease their likelihood of acquiring/transmitting communicable diseases. She pursued a Ph.D. to address how individual, dyadic, and neighborhood-level factors contribute to health disparities. Over time, she became increasingly interested in “mHealth research” as a mechanism for measuring event-level behavioral phenomenon and capturing information about high- and low-risk activity spaces. She completed a Predoctoral Research Fellowship sponsored by the Indiana University-Purdue University Indianapolis Center for Urban Health to use smartphone-delivered digital diaries to measure how situational factors (e.g., drug craving; mood; relationship to sexual partner; day, time, or location of sex) impact HIV risk among women engaging in transactional sex. In 2012, Dr. Roth began an NIDA-funded postdoctoral fellowship (T32 DA 023356) in the Division of Global Public Health at the University of California, San Diego (UCSD). At UCSD, her interest in mHealth research intensified as she began to consider how drug use impacts adherence to antiretroviral treatment among persons who inject illicit drugs. In September 2014, she joins the Department of Community Health and Prevention at Drexel University as Assistant Professor. In Philadelphia, she will utilize a community-engaged research approach to design and evaluate intervention studies for STIs, HIV, and drug abuse-related disparities.

Mentored Research Project (MRP) Title
Ethical considerations for mHealth research with persons who inject drugs

Abstract
“mHealth” research, which leverages the increasingly sophisticated capabilities of mobile communications technology for measurement and intervention in health research and care, offers a novel opportunity to measure and intervene in real time. As a new field of inquiry, researchers have yet to articulate best-practice guidelines for working with vulnerable populations (e.g. persons who inject drugs, hereafter PWIDs). PWIDs who reported using greater than 1 drug at least weekly (heroin, methamphetamine, cocaine, benzodiazepines, marijuana or alcohol) who live in Philadelphia and San Diego were enrolled into a one visit study in which they completed multiple simulations of the diary instrument and a qualitative interview regarding the experience. Interviews assessed ethical biomedical research principles.  Interviews were transcribed verbatim and are currently being analyzed. Our thematic analysis includes structured and emergent codes that are being applied to the transcripts. At this point in the analysis participants identified few, if any, harms related to participation in the EMA study and all reported potential benefits associated with participation. Participants provided insights into processes for participant selection to be fair while maximizing data collection for the study protocol, and on how to maximize the risk-benefit ratio. Results from this project will be used to develop a future cell phone diary study of injection drug use and to establish best-practice guidelines for other researchers interested in using mHealth tools with populations who engage in illegal behavior.

MRP Publications
Roth, A.M., Felsher, M., Reed, M., Goldshear, J.L., Truong, Q., Garfein, R.S., & Simmons, J. (2017). Potential benefits of using ecological momentary assessment to study high-risk polydrug use. mHealth, 3:46. https://doi.org/10.21037/mhealth.2017.10.01

Roth, A.M., Rossi, J., Goldshear, J.L., Truong, Q., Armenta, R.F., Lankenau, S.E., Garfein, R.S., & Simmons, J. (2017). Potential Risks of Ecological Momentary Assessment Among Persons Who Inject Drugs. Substance Use & Misuse, 52(7): 840-847. https://doi.org/10.1080/10826084.2016.1264969

DARPUN SACHDEV, MD

Clinical Prevention Specialist
Linkage, Integration, Navigation and Comprehensive Services (LINCS)
San Francisco Department of Public Health
San Francisco, California

Background
Darpun Sachdev, MD is a Clinical Prevention Specialist at the San Francisco Department of Public Health. After receiving her MD at Brown University, she was a resident and Chief Resident in Internal Medicine at Mount Sinai Hospital in New York and completed her Infectious Disease Fellowship at Columbia University. She is a board certified internist and completed her specialty training in Infectious Disease. Darpun’s research focuses on the epidemiologic and biologic risk factors for acquisition of HIV, and clinical trials of biomedical interventions to prevent HIV transmission. She is currently leading a quantitative study to evaluate preferences toward antiretroviral-based prevention strategies in Bronx, NY and a qualitative study to evaluate community and stakeholder perspectives toward standards of prevention care in HIV prevention trials. She recently completed a national survey to evaluate physicians’ willingness to prescribe oral and topical pre-exposure prophylaxis. At Bridge HIV, she provides scientific expertise and leadership to conduct Phase 1-3 HIV vaccine trials in San Francisco. She plans to continue to focus on improving the design and delivery of HIV prevention modalities. Ultimately, she hopes to design combination HIV prevention trials that evaluate community-level impact and effectively utilize surrogate endpoints. 

Mentored Research Project (MRP) Title
Fair Access to effective Interventions in Research trials (FAIR study): A qualitative study

Abstract
Background: Given the efficacy of pre-exposure prophylaxis (PrEP), there is ongoing debate regarding whether future placebo-controlled biomedical HIV prevention trials are ethically justifiable. Several innovative trial designs are under consideration to test new biomedical HIV prevention modalities provide PrEP as part of the standard of prevention or use PrEP as an active control. However, little is known about the ethical considerations of these designs. Methods: We purposively sampled and conducted in-depth interviews with 22 experts in clinical research methods and ethics. These experts included 6 principal investigators, 2 biostatisticians, 4bioethicists, 4 community advocates, 4 representatives of funding agencies, and 2 social scientists, each with experience in HIV prevention trials. We sought to understand potential trial designs for HIV vaccines or long-acting PrEP that have been under consideration, and identify preferences among these designs. We analyzed interview transcripts using constant comparative methods to inductively develop and refine themes. Results: Respondents outlined tensions to providing oral PrEP, and generally agreed it should be offered as the standard prevention in future biomedical HIV prevention trials. Key tensions included practical challenges to providing PrEP as the standard of prevention. Respondents also outlined opportunities for addressing these challenges through adaptive trial designs. Conclusions: Given the challenges and opportunities of incorporating oral PrEP as part of future clinical trials, adaptive trial designs, which allow for modification of a trial in response to study data, were highly acceptable to respondents. However, adaptive trials create new bioethical and biostatistical challenges. If adaptive HIV prevention trials are implemented, research ethics studies should focus on how to mitigate undue influence and enhance research literacy.

Sean Young, HIV FellowSEAN YOUNG, PHD

Associate Professor
Departments of Emergency Medicine and Informatics
University of California, Irvine
Executive Director, University of California Institute for Predication Technology
Executive Director, UCLA Center for Digital Behavior
University of California

Background

Sean Young, PhD, MS, is the Executive Director of the University of California Institute for Prediction Technology, the UCLA Center for Digital Behavior, a Medical School and Informatics Professor with the UCI Departments of Emergency Medicine and Informatics, and the #1 Wall Street Journal and International Best-Selling author of Stick With It. Dr. Young received his PhD in Psychology and Master's degree in Health Services Research from Stanford University, worked in technology and user behavior/human factors at NASA Ames Research Center and Cisco Systems, taught at the Stanford University Graduate School of Business, and has advised various companies and start-ups. He is an internationally-recognized speaker, having presented at forums such as the European ParliamentmHealth ConferenceWorld Congress, as well as corporations, academic institutions, and organizations. Before recently moving to UCI, he was a medical school professor in the UCLA Department of Family Medicine, where he continues to hold a joint appointment. Dr. Young studies digital behavior and prediction technology, or how and why people use social media, mobile apps, and wearable devices.  He helps people and businesses apply this knowledge to predict what people will do in the future (in areas like health, medicine, politics, and business) and to change what they will do in the future. He has a blog called BlackBoxPhd.com where he interviews experts in areas related to behavior to teach people how to improve their lives and work, and has a podcast on Audible.com called Sean Young, PhD on this topic.

Mentored Research Project (MRP) Title
Ethics and Social Networking for HIV Research

Abstract
Social media technologies have become increasingly useful tools for research-based interventions. However, participants and social media users have expressed ethical concerns with these studies, such as risks and benefits of participation, as well as privacy, confidentiality, and informed consent issues. This study was designed to follow up with and assess experiences and perceptions of ethics-related issues among a sample of 211 men who have sex with men who participated in the Harnessing Online Peer Education (HOPE) Peru study, a randomized controlled HIV prevention intervention conducted in Peru. We found that after adjusting for age, highest educational attainment, race, sexual orientation, and prior HIV research experience, participants in the intervention group were more likely than those in the control group to have safe sex (p = 0.0051) and get tested for HIV regularly (p = 0.0051). As a result of their participation, those in the intervention group benefited more positively than participants in the control group in improving HIV care (p = 0.0077) and learning where to receive sexual health services (p = 0.0021). Participants in the intervention group expressed higher levels of comfort than those in the control group in joining and seeing other people in the Facebook group (p = 0.039), seeing other people’s posts (p = 0.038) and having other group members talk to them online (p = 0.040). We discuss the implications of these results as they relate to social media-based HIV research.

MRP Publications
Chiu, C. J., Menacho, L., Fisher, C., & Young, S. D. (2015). Ethics Issues in Social Media–Based HIV Prevention in Low-and Middle-Income Countries. Cambridge Quarterly Healthcare Ethics, 24(3) 303-310. https://doi.org/10.1017/S0963180114000620

Chiu, C. J., Menacho, L., & Young, S. D. (2016). The Association Between Age and Ethics-Related Issues in Using Social Media for HIV Prevention in Peru. Ethics & Behavior, 26(2), 99-109. https://doi.org/10.1080/10508422.2014.991868

Garett, R., Menacho, L., & Young, S.D. (2017). Ethical Issues in Using Social Media to Deliver an HIV Prevention Intervention: Results from the HOPE Peru Study. Prevention Science: Official Journal of the Society for Prevention Research, 18(2): 225-232. https://doi.org/10.1007/s11121-016-0739-z

RETI, fellowTANIA BASTA, PHD, MPH

Dean
College of Health and Human Services
Western Kentucky University
Bowling Green, Kentucky

Background
Dr. Tania Basta received a BS in Kinesiology and a Master of Public Health (MPH) in Community Health Education from Indiana University and a PhD in Health Promotion and Behavior from the University of Georgia. Dr. Basta has over 13 years of combined public health research and professional experience. She started her public health career as a worksite health practitioner, but in the past 10 year has worked extensively with domestic community-based organizations focused on HIV/AIDS. Dr. Basta has been a faculty member at Ohio University since 2006, had been an Associate Professor in Department of Social and Public Health since 2011, but was recently notified of her promotion to Full Professor. She also served as Interim Chair in 2016-17 and was selected as Chair in 2017 after a national search. She also was Assistant Professor of Community Health Services in the School of Public Health Sciences and Professions and served as a faculty member of Communication and Development Studies, affiliated faculty in African Studies Program and Latin American Studies and associate director and affiliated researcher for the Appalachian Rural Health Institute.

Mentored Research Project (MRP) Title
Consent Preparedness for Home-Based HIV Testing Research in Rural Appalachia

Abstract
This study sought to assess barriers and enhance readiness to consent to home and Planned Parenthood HIV testing among 60 out-patients from a mental health and substance abuse clinic in rural Appalachia. Testing barriers included not knowing where to get tested, lack of confidentiality, and loss of partners if one tested sero-positive. The intervention yielded lowered HIV stigma, increase in HIV knowledge, and agreement to take the HIV home test. These results are encouraging because they suggest that a brief educational intervention is a critical pathway to the success of the National Institutes on Drug Abuse’s Seek, Test, Treat, and Retain initiative in poor rural counties.

MRP Publications
Basta, T. B., Stambaugh, T., & Fisher, C. B. (2015). Efficacy of an Educational Intervention to Increase Consent for HIV Testing in Rural Appalachia. Ethics & Behavior, 25(2): 129-145. https://doi.org/10.1080/10508422.2014.948958

RETI, fellowsBRANDON BROWN, PHD, MPH

Associate Professor
School of Medicine, Center for Healthy Communities
University of California, Riverside
Riverside, California

Background
Dr. Brandon Brown's research interests include both the local and global impact and ethics of prevention of human papillomavirus virus (HPV) other sexually transmitted infections (STIs) including HIV, as well as ethical issues related to payment in research. He has received funding from the National Institutes of Health (NIH), FHI360, Merck Pharmaceuticals, UC Riverside, and the Patient-Centered Outcomes Research Institute (PCORI) to conduct his research, working closely with community partners. Brown arrived at UCR in July 2015 after working for four years at the University of California, Irvine. His research activities included epidemiological work on HIV and HPV-related disease, and cancer prevention among underserved populations including female sex workers, men who have sex with men, and transgender women in Peru, Mexico and Nigeria. He was founder and director of the Global Health Research Education and Translation program and a faculty mentor for the California Alliance for Minority Participation program. He earned his bachelor's degree in applied mathematics from the University of California, Irvine, followed by a M.P.H. in epidemiology from UCLA. He then attended the Johns Hopkins Bloomberg School of Public Health to earn his Ph.D. in international health with a focus on epidemiology, then conducted his postdoctoral work in global health back at UCLA. Brandon received additional training through the UCLA CHIME/RCMAR program, as a HPTN Scholar, at the Fordham HIV Research Ethics Training Institute, and the Hastings Center for Bioethics. Brown is a member of the Infectious Disease Society of America, the International Society of Vaccines, the Global Health Council, American Public Health Association, American Academy for the Advancement of Science, and the UC Global Health Institute. He has authored over 100 publications with over 1000 citations, and is a regular reviewer for high impact journals. He often engages the public on his research through oral presentations, newspaper and print media, and digital media.

Mentored Research Project (MRP) Title
Voluntary study participation in a clinical trial of HPV vaccine with Peruvian FSWs

Abstract
This study examined female sex workers’ evaluation of ethically relevant experiences of participating in an HPV4 vaccine clinical trial conducted in Lima, Peru (the Sunflower Study). The Sunflower Study provided all participants with HPV testing, treatment for those testing positive, and access to the vaccine for all testing negative. Themes that emerged from content analysis of interviews with 16 former participants included the importance of respectful treatment and access to healthcare not otherwise available and concerns about privacy protections, the potential for HIV stigma, and poststudy abandonment.

MRP Publications
Brown, B., Davtyan, M., & Fisher, C.B. (2015). "Peruvian female sex workers’ ethical perspectives on their participation in an HPV vaccine clinical trial". Ethics & Behavior, 25(2): 115-128.

RETI, fellowBRENDA CURTIS, PHD, MSPH

Section Chief
Technology and Translational Research Unit
National Institutes of Health (NIH)

Background
Dr. Brenda Curtis is currently a an Section Chief at the National Institutes of Health (NIH). She received her Masters of Science in Public Health from the University of Illinois and her Doctoral degree from the Annenberg School for Communication at the University of Pennsylvania. Her principal research interests have been in the fields of Health Communication and Public Health. She is very interested in providing scientifically tailored health information that is evidence based. She attempts to translate research into programs that allow for the building of individual and community capacity. In her recent research, she developed a web-based smoking cessation intervention program and conducted a randomized controlled trial to assess the relative effectiveness of tailoring the intervention content to particular demographic (age, gender, ethnicity), and also functional behavioral attributes of the individuals in the target population. That is, the computer used particular presentations of the same message that were individually designed to attributes known to be important in gaining attention and shaping behavior. She found that this relatively simple and inexpensive procedure was able to improve intention to quit by over 19%. Dr. Curtis is continuing to explore this line of research and recently deployed a substance use screening and brief intervention web-based interactive program she developed into a New York school district. Dr. Curtis is also working on innovative ways to increase enrollment and retention of hard to reach populations into HIV clinical trials. Her research has led her to examine the ethical implications raised by the use of the Internet and social media to recruit and retain subjects into HIV related studies. She is particularly interested in assessing how Institutional Review Boards are implementing new policies and procedures to deal with online recruitment.

Mentored Research Project Title (MRP)
Online Recruiting for HIV Research: Ethical Issues and Concerns for Investigators and IRBs

Abstract
Online research has become a critical recruitment modality for understanding and reducing health disparities among hidden populations most at risk for HIV infection. There is a lack of consensus and guidelines for the responsible conduct of online recruitment for HIV risk populations. Using semi-structured phone interviews, this study drew on the experiences of principal investigators (PIs) engaged in online HIV research to illuminate scientific and ethical benefits and challenges of social media recruitment. Using Thematic Analysis five major themes emerged: sampling advantages and disadvantages; challenges of data integrity; control of privacy protections; researcher competence and responsibility; and resources.

MRP Publications
Curtis, B.L. (2014). Social networking and online recruiting for HIV research: ethical challenges. Journal of Empirical Research on Human Research Ethics, 9(1), 58-70. https://doi.org/10.1525/jer.2014.9.1.58

Bragard, E., Fisher, C.B., & Curtis, B. (2019). “They know what they are getting into:” Researchers confront the benefits and challenges of online recruitment for HIV research. Ethics & Behavior. 1-15. https://doi.org/10.1080/10508422.2019.1692663

RETI, fellowSHIRA GOLDENBERG, PHD

Assistant Professor
Department of Health Sciences
Simon Fraser University
Burnaby, British Columbia

Background
Dr. Shira Goldenberg is an Assistant Professor in the Faculty of Health Sciences at Simon Fraser University and a Research Scientist with the Centre for Gender and Sexual Health Equity (CGSHE) at Providence Health Care. She is also an adjunct faculty member in the Division of Infectious Diseases and Global Public Health at the University of California, San Diego School of Medicine. Dr. Goldenberg is the recipient of a prestigious Canada-U.S. Fulbright award and received her PhD in Public Health (Global Health) at the University of California, San Diego and San Diego State University (2011). Her postdoctoral training at the University of California, San Diego and the Gender and Sexual Health Initiative of the BC Centre for Excellence in HIV/AIDS focused on community-based HIV and sexual health equity research, prospective and mixed methods approaches, and ethical approaches to community-based HIV research. Dr. Goldenberg’s research aims to better understand and address inequities related to sexual health, access to healthcare, and human rights for marginalized populations, including im/migrants, sex workers, and young women in Canada, Latin America, and other international settings. Her research employs qualitative, mixed-methods, social epidemiological, spatial and community-based research approaches. She is passionate about conducting community-based research to reduce health and social inequities faced by marginalized communities. Her work is informed by advisory support and partnerships with sex work, immigrant support, and public health organizations and policy bodies at the local, national, and global levels. Dr. Goldenberg is currently the Principal Investigator of the Evaluating Inequities in Refugee and Immigrant Women’s Sexual and Reproductive Health Access (IRIS) Study, a CIHR-funded mixed-methods evaluation of immigrant women’s engagement with and access to sexual and reproductive health services in BC, using administrative population-based data and prospective qualitative interviews. She is also joint PI of An Evaluation of Sex Workers’ Health Access (AESHA), which is an ongoing longitudinal, community-based cohort study examining the impacts of structural and system-level interventions (e.g., community empowerment, policing, peer-led HIV/STI testing) on sexual health inequities and access to care among women sex workers in Metro Vancouver, BC.

Mentored Research Project (MRP) Title
Barriers and Facilitators to Participation in HIV Research: Female Sex Workers’ Perspectives

Abstract
This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecún Umán, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/STI prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need for HIV investigators to develop population-tailored procedures to reduce stigma; engage managers; and reinforce trusting, reciprocal relationships between sex work communities and researchers.

MRP Publications
Goldenberg, S.M., Mindt, M.R., Jimenez, T.R., Brouwer, K.C., Miranda, S.M., & Fisher, C.B. (2014). Structural and interpersonal benefits and risks of participation in HIV research: perspectives of female sex workers in Guatemala. Ethics & Behavior, 25(2): 97-114 https://doi.org/10.1080/10508422.2014.950270

Goldenberg, S. M., Brouwer, K. C., Jimenez, T. R., Miranda, S. M., & Mindt, M. R. (2016). Enhancing the Ethical Conduct of HIV Research with Migrant Sex Workers: Human Rights, Policy, and Social Contextual Influences. PLoS One, 11(5). https://doi.org/10.1371/journal.pone.0155048

Rocha-Jimézes, T., Brouwer, K.C., Silverman, J.G., Morales-Miranda, S., & Goldenberg, S.M. (2016). Migration, violence, and safety among migrant sex workers: a qualitative study in two Guatemalan communities. Culture, Health & Sexuality, 18(9): 965-79. https://doi.org/10.1080/13691058.2015.1122229

Rocha-Jimézes, T., Brouwer, K.C., Silverman, J.G., Morales-Miranda, S., & Goldenberg, S.M. (2017). Exploring the Context and Implementation of Public Health Regulations Governing Sex Work: A Qualitative Study with Migrant Sex Workers in Guatemala. Journal of Immigrant and Minority Health, 19(5): 1235-1244. https://doi.org/10.1007/s10903-016-0399-x

Goldenberg, S. M., Rocha Jiménez, T., Brouwer, K. C., Morales Miranda, S., & Silverman, J. G. (2018). Influence of indoor work environments on health, safety, and human rights among migrant sex workers at the Guatemala-Mexico Border: a call for occupational health and safety interventions. BMC International Health and Human Rights, 18(1), 9. https://doi.org/10.1186/s12914-018-0149-

RETI, fellowTHOMAS GUADAMUZ, PHD

Associate Professor
Mahidol University

Background
Dr. Thomas Guadamuz completed graduate training in infectious disease epidemiology at Johns Hopkins Bloomberg School of Public Health and later completed postdoctoral training in behavioral and social sciences and health at the University of Pittsburgh and Mahidol University in Thailand. Dr. Guadmuz's research interests are in global health, HIV preventive interventions among sexual, racial and ethnic minority populations, and social determinants of health. Trained in infectious disease epidemiology and social and behavioral interventions, Dr. Guadmuz has worked with sexual and ethnic minority populations in urban and rural areas in Thailand, The Philippines, Vietnam, and in several urban areas in the United States. Currently, Dr. Guadmuz is the principal investigator of several intervention-related projects that directly respond to the escalating HIV epidemic among young men who have sex with men (MSM) in Thailand and other parts of Asia. Moreover, Dr. Guadmuz is the scientific advisor on several research and implementation projects with the World Health Organization; UN International Labor Organization; United Nations Educational, Scientific and Cultural Organization; and the Thailand Ministry of Public Health in understanding HIV risks among MSM, transgender and sex worker populations in Asia and the Pacific.

Mentored Research Project (MRP) Title
Barriers and facilitators to YMSM participating in HIV-related research studies in Thailand: Perspectives of parents and teens

Abstract
Young men who have sex with men (YMSM) under 18 years are often excluded from HIV prevention research in Thailand due to cultural attitudes toward youth sexuality, social stigma, and difficulties obtaining guardian permission. Culturally sensitive focus group discussions and in-depth interviews were conducted with parents and YMSM in Bangkok, Thailand and identified barriers and facilitators related to minors’ participation in HIV prevention research. Although gender and class differences emerged, mothers and fathers were generally accepting of research to reduce HIV risk,but not in favor of waiver. Youth’s positive attitude toward parental permission wastempered by concerns about harms posed by disclosing same-sex attraction through permission forms.

MRP Publications
Guadamuz, T. E., Goldsamt, L. A., & Boonmongkon, P. (2015). Consent Challenges for Participation of Young Men Who Have Sex With Men (YMSM) in HIV Prevention Research in Thailand. Ethics & Behavior, 25(2), 180–195. https://doi.org/10.1080/10508422.2014.949721

Charmain thokoaneCHARMAINE THOKOANE

Dean of Instruction
Nova Pioneer
Midrand, South Africa

Background
Charmaine Thokoane is the Dean of Instruction at Nova Pioneer, a a Pan-African independent school network offering preschool through secondary education for students from ages 3 through 18.  In addition to this, she has worked with governmental and non-governmental institutions in South Africa, as well as, non-governmental organizations and academic institutions in the Eastern and Southern African region on Human Rights and, Sexual and Reproductive Health. She has represented the Center for the Study of AIDS (CSA) in various forums in South African and other African countries. Her areas of interest in Public Health and Human Rights developed after joining the CSA as a volunteer in 2005, while studying towards a degree in natural and agricultural sciences. In 2010, she was selected by the US Embassy, to be part of the US State Departments’ International Visitor Leadership Programme on Skills and Youth Development (February 2011). The knowledge and skills she gained through this experience, has helped shape her community work.

Mentored Research Project (MRP) Title
Knowledge of rights to sexual reproductive health services among 12-18 year olds in Hammanskraal

Abstract
This article describes challenges of conducting an HIV prevention program involving 40 male and female participants ages 12–18 in Hammanskraal, South Africa, aimed at increasing awareness and knowledge of laws protecting children’s sexual health rights and access to services through a culturally based “study circle” format. Challenges highlighted by the project included Institutional Review Board approval of youth consent procedures, cooperation and coordination with local policymakers, the need to modify presentation materials to youths’ comprehension levels, availability of youth-based sexual health service providers, and cultural ambiguity over parental involvement in youth health care decisions and laws pertaining to sexual relationships among minors.

MRP Publications
Thokoane, C. (2014). Ethical challenges for piloting sexual health programs for youth in Hammanskraal, South Africa: Bridging the gap between rights and services. Ethics & Behavior, 25(2): 169-179. https://doi.org/10.1080/10508422.2014.954117

Kristen underhillKRISTEN UNDERHILL, DPHIL, JD

Associate Professor of Law
Cornell Law School

Background
Dr. Kristen Underhill is an Associate Professor of Law at Cornell Law School. Her scholarship focuses on health law, with an interest in how the law influences individual decisions about risk and health behavior. Underhill studies how laws and regulations affect individual choices by arranging incentives, shaping opportunities, influencing underlying preferences, and communicating information about social norms. Her recent and ongoing projects focus on the effectiveness of changes to Medicaid programming; the uses of empirical evidence and experiments in policy decisions; the influence of nondiscrimination law on patient decision-making; the ways in which financial incentives influence intrinsic motivation; the influence of implicit racial bias in altruistic decisions; and dispute resolution for injuries related to biomedical research. 

Mentored Research Project (MRP) Title
Exploring IRB Responses to Participant Complaints: Processes, Values, and Resources

Abstract
Under US federal regulations, participants providing informed consent must receive information regarding whom to contact in case of a research-related injury or complaint. Although informed consent processes routinely direct participants to contact institutional review boards (IRBs) with questions or concerns, there has been little empirical study of the ways in which IRBs act to resolve participants' research-related complaints. This article explores available literature on participant complaints, considers the responsibilities of IRBs in dispute resolution, and outlines a research agenda. As a case study, this review considers disputes arising from HIV/AIDS research, focusing on novel issues arising from biomedical HIV prevention trials.

MRP Publications
Underhill K. (2014). Legal and ethical values in the resolution of research-related disputes: how can IRBS respond to participant complaints? Journal of Empirical Research on Human Research Ethics9(1), 71–82. https://doi.org/10.1525/jer.2014.9.1.71

Underhill, K. (2019). Righting Research Wrongs: An Empirical Study of How U.S. Institutions Resolve Grievances Involving Human Subjects, 18. Yale Journal of Health Policy, Law, & Ethicshttp://dx.doi.org/10.2139/ssrn.3271860

RETI FellowMICHELLE BROADDUS, PHD

Associate Professor
Department of Psychiatry and Behavioral Medicine
Medical College of Wisconsin
Milwaukee, Wisconsin

Background
Michelle Broaddus, PhD, is an assistant professor in the Medical College of Wisconsin Department of Psychiatry and Behavioral Medicine as well as the program evaluator for the Wisconsin Child Psychiatry Consultation Program. She obtained her doctorate from the University of Colorado, Boulder. Dr. Broaddus's general research interests are in the development and evaluation of community-based, clinic-based, and public health programs to improve mental health, substance use, and outcomes along the HIV care continuum, as well as HIV prevention research ethics, and contexts of sexual risk behavior among high-risk youth and adolescents. Specific current HIV-related interests include Milwaukee Disease Intervention Specialists’ barriers and facilitators to identifying and linking HIV and STI-infected individuals to treatment, the effects of gangs and gang membership on community and individual risk behavior, and the intersectionality of HIV stigma, masculinity, gender, and race within contexts of HIV prevention and care.

Mentored Research Project (MRP) Title
Participant perspectives of risks and benefits of participating in a text message-delivered intervention for safer sex communication

Abstract
Interventions to decrease acquisition and transmission of sexually transmitted diseases among African American women using text messages versus small group delivery modalities pose distinct research risks and benefits. Determining the relative risk-benefit ratio of studies using these different modalities has relied on the expertise of investigators and their institutional review boards. In this study, African American women participated in focus groups and surveys to elicit and compare risks and benefits inherent in these two intervention delivery modalities, focusing on issues such as convenience, privacy, and stigma of participation. Some risk/benefit variables were implicated in willingness to participate the two intervention modalities.

MRP Publications
Broaddus, M. R., & Marsch, L. A. (2015). Risks and benefits of text message-delivered and small group-delivered sexual health interventions among African American women in the Midwestern U.S. Ethics & Behavior, 25(2), 146–168. https://doi.org/10.1080/10508422.2014.948957

Peter DavidsonPETER DAVIDSON, PHD

Associate Adjunct Professor
Department of Medicine
Health Sciences
University of California San Diego

Background
Peter Davidson received his PhD in medical sociology from the University of California, San Francisco in 2009. Dr. Davidson has been conducting research and harm-reduction based intervention development around heroin-related overdose and the transmission of HIV, hepatitis C, and sexually transmitted infections among drug users in Australia and the United States since 1997. Dr. Davidson's dissertation project explored the influence of policing practices on the movements and economic activities of a highly mobile group of homeless young injecting drug uses in San Francisco, and how these in turn affect the willingness and ability of young injectors to utilize needle exchange services. His work also involves explorations of how injecting drug users and other economically marginalized populations ‘make sense’ of research participation, and the ethical implications of these understandings.

Mentored Research Project (MRP Title)
Disjuncts in understanding: An exploration of differences in the ways drug users, researchers, and federal code understand research participation

Abstract

This research project utilizes a grounded theory / situational analysis approach to explore how research participants understand and experience research participation, and compares these understandings with those embedded in US Federal Code regulating research with human subjects. Participants were primarily drawn from a group of young people who inject drugs (PWID) and who are or have recently been participants in an epidemiological study of HIV and HCV transmission conducted by the University of California, San Francisco. Data collection among this group involved qualitative focus groups (2 groups involving 14 people total) and one-on-one interviews (22 people) conducted using procedures drawn from grounded theory and situational analysis. Three additional one-on-one interviews were conducted with researchers to clarify and explore points raised by research participants. Preliminary data was presented at the national Harm Reduction Conference in November 2012, a conference attended by needle exchange workers and other individuals who work directly with PWID; feedback from conference attendees is also being incorporated into data analysis. Data collection ended in February 2013, and final analysis is currently underway. The research is expected to offer insight into disjuncts between the ways Federal Code and young PWID understand research participation which have the potential to inadvertently leave research participants feeling mistreated.

JENNIFER HETTEMA, PHD

Associate Professor
Department of Family and Community Medicine   
University of New Mexico

Background
Jennifer Hettema is a clinical psychologist and conducts research on development, evaluation, and dissemination of brief behavioral health interventions in medical and other settings with an emphasis on promoting health equity. She is a member of the Motivational Interviewing Network of Trainers and much of her research integrates this approach. Dr. Hettema is the Principal Investigator of several large federally funded grants investigating the impact of brief motivational interviewing on an array of behaviors, including unintended pregnancy, unhealthy alcohol use, drug use, and medication adherence. She develops curricula and teaches medical students, residents, faculty, and other health professions students. Dr. Hettema is also the Interim Vice Chair for Research in the DFCM where she develops and implements strategies to promote scholarly activity and support grant writing.

Mentored Research Project (MRP) Title
Physician attitudes and behavior towards HIV+ IDUs

Abstract
While adherence to HAART may be affected among IDUs, due to the instable lifestyle associated with drug seeking and use (Wood et al., 2008), the risk of development of antiretroviral resistance among IDUs has not been found to be higher than their non-IDU counterparts (Werb et al., 2010). Despite this, IDU status has been found effect access to care for HIV (WHO, 2006; Wood et al., 2008), with evidence that physician reluctance to prescribe HIV may play contribute to this disparity (Bassetti, 1999; Ding et al., 2005). To determine the impact of IDU status on physician prescribing behavior, a national sample of community-based HIV prescribing providers completed an online survey in which they were presented with two case vignettes describing a patient with previous adherence issues presenting for treatment and requesting reinstatement on antiretroviral medications. The vignettes were identical with the exception of the IDU status of the patient. Participants were randomly assigned to see either the IDU or non-IDU (NIDU) vignette first. To date 156 participants have consented to participate in the study and 112 of these submitted complete responses. Participants were predominately female (55.8%), White (77.9%), and practicing in Urban settings (80.5%). Participants were well distributed by state. Most participants were physicians (47.8%) or nurse practitioners (45.1%), with a smaller samples of physician assistants (7.1%). Independent samples t-tests revealed that neither IDU prescribing behavior (t(118)=-.258, p=.797) nor NIDU prescribing behavior (t(117)=-.693) differed significantly by condition (order of presentation). Consequently, conditions were collapsed for future analyses. A paired samples t-test was conducted to evaluate the impact of patient IDU status on prescribing behavior. There was a statistically significant difference between reported likelihood of prescribing for NIDU (M=3.51, SD=1.37) versus IDU patients (M=3.03, SD=1.37), t(115) = -5.03, p < .001. Attitudes towards shared decision making and concerns about adherence are both predictive of less willingness to prescribe to IDUs.

Kristin KostickKRISTIN KOSTICK, PHD

Assistant Professor
Center for Medical Ethics and Health Policy
Baylor College of Medicine

Background
Kristin Kostick is a medical anthropologist whose research focuses on ethical, social and cultural factors related to emerging bio- and neurotechnologies. Her recent publications address a range of ethical issues in the field, including concerns related to return of individual results to participants in psychiatric genetics research, ethical and social concerns about the increasing use of direct-to-consumer neurotechnologies, and a examination of sociocultural values driving the “longevity movement” and its associated technologies. Her other recent work centers on medical decision-making about Left Ventricular Assist Device (LVAD) treatment for advanced heart-failure, and involves implementation and dissemination (D&I) and of a patient decision aid for LVAD, including translation of decision making and risk prediction tools into clinical practice. She has also recently published on patient versus caregiver perspectives on consciousness and its role in decision-making about continued care for individuals who are minimally conscious. Her other recent and former research has focused on the role of socioeconomic status in sexual risk and drug use.

Mentored Research Project (MRP) Title
Exploring participant experiences in a peer-delivered HIV intervention with IV drug users

Abstract
We explore ethical issues faced by investigators as they conduct research as part of a peer-delivered HIV/AIDS risk reduction program for injection drug users (IDUs). Staff and participant experiences in peer-delivered interventions among IDUs have come under scrutiny by ethics researchers because of their potential to inadvertently and negatively impact participant rehabilitation due to continued engagement with drug-using networks during the course of outreach. This study explores whether enhanced communication of participant concerns and experiences with clinic and research staff helps to reduce inadvertent malfeasance in peer-delivered drug treatment interventions. Results contribute to the development of patient support infrastructure in peer-delivered risk reduction programs involving IDUs.

MRP Publications
Kostick, K. M., Weeks, M., & Mosher, H. (2014). Participant and Staff Experiences in a Peer-Delivered HIV Intervention with Injection Drug Users.” Journal of Empirical Research on Human Research Ethics, 9(1), 6-18. https://doi.org/10.1525/jer.2014.9.1.6

Weeks, M. R., Kostick, K., Li, J., Dunn, J., McLaughlin, P., Richmond, P., Choudhury, S., Obidoa, C., Mosher, H., & Martinez, M. (2015). Translation of the Risk Avoidance Partnership (RAP) for Implementation in Outpatient Drug Treatment Clinics. Journal of psychoactive drugs, 47(3), 239–247. https://doi.org/10.1080/02791072.2015.1050535

RETI, fellowPURNIMA MADHIVANAN, MBBS, MPH, PHD

Associate Professor                                                                  Health Promotion Sciences Department Mel and Enid College of Medicine University of Arizona

Background
Purnima Madhivanan is an Associate Professor with Tenure in the Mel and Enid Zuckerman College of Public Health. A physician by training, she completed three years of her postdoctoral training at the San Francisco Department of Public Health in 2010. Subsequently, she completed a fellowship at the Institute for Research on Women and Gender at the University of Michigan. In 2012, in collaboration with Yale, Stanford and University of California, Berkeley, FIU was a recipient of a NIH-funded grant to train doctoral and postdoctoral fellows in Global Health Research. Dr. Madhivanan serves a co-principal investigator on the grant and represents FIU as the program director. For the past 18 years, her research has focused on disadvantaged populations, elucidating the dynamics of poverty, gender, and the environmental determinants of health. To position her research close to the communities she serves, Dr. Madhivanan established a clinical research site in Mysore, India in 2005 while completing her doctoral dissertation. For over a decade, the Prerana Women’s Health Initiative has delivered low-cost, high-quality reproductive health services to 12,000 low-income women. Dr. Madhivanan’s current research focuses on addressing the systemic inequities that put India’s tribal women at-risk for sexually transmitted infections, HIV, and poor birth outcomes. Her research has resulted in more than 80 peer-reviewed publications in several high-impact journals. Dr. Madhivanan’s global health research credentials and clinical service has brought unique opportunities for collaboration, most recently benefiting FIU students and faculty interested in learning about community-based research and service in a developing world setting.

Mentored Research Project (MRP) Title
Ethical issues in the deliver of prevention of mother-to-child transmission of HIV interventions in South India

Abstract
In India, approximately 49,000 women living with HIV become pregnant and deliver each year. While the government of India has made progress increasing the availability of prevention of mother-to-child transmission of HIV (PMTCT) services, only about one quarter of pregnant women received an HIV test in 2010, and about one-in-five that were found positive for HIV received interventions to prevent vertical transmission of HIV. Between February 2012 to March 2013, 14 HIV-positive women who had recently delivered a baby were recruited from HIV positive women support groups, Government of India Integrated Counseling and Testing Centers, and nongovernmental organizations in Mysore and Pune, India. In-depth interviews were conducted to examine their general experiences with antenatal healthcare; specific experiences around HIV counseling and testing; and perceptions about their care and follow-up treatment. Data were analyzed thematically using the human rights framework for HIV testing adopted by the United Nations and India’s National AIDS Control Organization. While all of the HIV-positive women in the study received HIV and PMTCT services at a government hospital or antiretroviral therapy center, almost all reported attending a private clinic or hospital at some point in their pregnancy. According to the participants, HIV testing often occurred without consent; there was little privacy; breaches of confidentiality were commonplace; and denial of medical treatment occurred routinely. Among women living with HIV in this study, violations of their human rights occurred more commonly in private rather than public healthcare settings. There is an urgent need for capacity building among private healthcare providers to improve standards of practice with regard to informed consent process, HIV testing, patient confidentiality, treatment, and referral of pregnant women living with HIV.

MRP Publication
Madhivanan, P., Krupp, K., Kulkarni, V., Kulkarni, S., Vaidya, N., Shaheen, R., Philpott, S. & Fisher, C.B. (2014). HIV testing among Pregnant Women Living with HIV in India: Are Private Providers Routinely Violating Women’s Human Rights? BMC International Health and Human Rights, 14(1), 7. https://doi.org/10.1186/1472-698X-14-7

Tamir, H., Krupp, K., Stephens, D.P., Zohourian, T., Dorcius, P.M., Arun, A., Fisher, C.B., & Madhivanan, P. (2018). Addressing Prevention Among HIV-Uninfected Women in PMTCT Programs in South India. The Journal of the Association of Nurses in AIDS Care, 29(1): 45-52. https://doi.org/10.1016/j.jana.2017.10.006

RETI, fellowCYNTHIA PEARSON, PHD

Director of Research
Indigenous Wellness Research Institute
Research Associate Professor
School of Social Work
University of Washington

Background
As Professor—School of Social Work, Adjunct Professor, American Indian Studies—and director of research at the Indigenous Wellness Research Institute, Dr. Cynthia Pearson provides oversite for IWRI research activities including development of institute and tribal partnership polices, quantitative and qualitative methods, data-related activates (collection, analyses, storage), as well as human subject protocols. Since 2006, Dr. Pearson has collaborated with American Indian (AI) communities in designing and implementing community based prevention interventions and in the development of tribally approved research polices (data use agreement, research and publication guidelines). Dr Pearson research focus is on the historical and cultural determinants of physical and mental health, HIV/AIDS, and substance use disorders. Dr. Pearson also produced rETHICS, a research with American Indian and Alaska Native community human subjects’ curriculum that satisfies IRB training requirements. She has over 55 peer-review publication and been the PI or Co-I on over 41 NIH funded grants. In all these community-based projects, Dr. Pearson has worked closely with communities designing and adapting culturally driven interventions and supporting tribal communities in disseminating information in peer-review publications and community venues.

Mentored Research Project (MRP) Title
Human subject research training for community researchers: A Pacific Northwest Native American cultural prospective

Abstract
Current Human Subject Research training modules fail to capture ethically relevant cultural aspects of research involving American Indian and Alaska Native (AI/AN) community members. Applying a Community Engaged Research (CEnR) approach, we adapted the Collaborative IRB Training Initiative training module “assessing risk and benefits.” In a two-arm randomized controlled trial, followed by debriefing interviews, we evaluated module acceptability and understandability (test scores) among 40 reservation-based community members. Participants who took the adapted module, compared to those who took the standard module, reported higher scores on relevance of the material overall satisfaction, module quiz scores, and a trend toward higher self-efficacy. Implications of the efficacy of this approach for enhancing ethics training and community participation in research within AI/AN and other cultural populations within and outside the United States are discussed.

MRP Publications
Pearson, C. R., Parker, M., Fisher, C. B., & Moreno, C. (2014). Capacity Building from the Inside Out: Development and Evaluation of a CITI Ethics Certification Training Module for American Indian and Alaska Native Community Researchers. Journal of Empirical Research on Human Research Ethics, 9(1), 46-57. https://doi.org/10.1525/jer.2014.9.1.46

Smartlowit-Briggs, L., Pearson, C., Whitefoot, P., Altamirano, B.N., Womack, M., Bastin, M., & Dombrowski, J.C. (2016). Community-Based Assessment to Inform a Chlamydia Screening Program for Women in a Rural American Indian Community. Sexually Transmitted Diseases, 43(6): 390-395. https://doi.org/10.1097/OLQ.0000000000000456

elizabeth reed RETI institute fellowELIZABETH REED, PHD, MPH

Associate Professor
Co-Director, SDSU-UCSD Joint Doctoral Program in Global Health
School of Public Health, Division of Health Promotion and Behavioral Science
San Diego State University
San Diego, California

Background
Dr. Elizabeth Reed is Associate Professor of global health at San Diego State University and Adjunct Associate Professor of Medicine at the University of California, San Diego. Trained in social epidemiology, she conducts research related to the intersection of gender inequality, poverty, and health. Specifically, she focuses her research on the social and economic factors influencing gender-based violence and sexual/reproductive health outcomes, including HIV/STI as well as adolescent and unintended pregnancy. She uses the findings of her research to support the development of public health programming to promote economic opportunity, health, and safety. Her research is based in the US, Latin America, South Asia, and Africa.

Mentored Research Project (MRP) Title
Perceptions of HIV prevention research participation among women working as sex workers in Andhra Pradesh, India

Abstract
Female sex workers (FSWs) from Andhra Pradesh, India, who had participated in HIV research were interviewed to examine participant perspectives on research ethics. Content analysis indicated that aspects of the consent process, staff gender and demeanor, study environment, survey content, time requirements for study participation, and perceived FSW community support for research were key factors influencing whether FSWs perceived their confidentiality and privacy had been maintained, and whether they felt the study was conducted respectfully. Findings suggest that partnership with community-based organizations and investigation of participant's experiences in HIV prevention research can provide critical information to best inform research ethics protocols, a particular priority among research studies with highly stigmatized populations, such as FSWs.

MRP Publications
Reed, E., Khoshnood, K., Blankenship, K. M., & Fisher, C. B. (2014). Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India. Journal of Empirical Research on Human Research Ethics, 9(1), 19-28. https://doi.org/10.1525/jer.2014.9.1.19

Reed, E., Fisher, C. B. Blankenship, K. & Brook, S. W Khoshnood, K. (2016). Why Female Sex Workers Participate in HIV Research: The Illusion of Voluntariness. AIDS Care, 1-5. https://doi.org/10.1080/09540121.2016.1271935

RETI, fellowLIANNE URADA, PHD, MSW

Assistant Professor
MSW/MPH Program Advisor 
School of Social Work
San Diego State University
San Diego, California

Background
Lianne Urada, PhD, MSW, LCSW is an Assistant Professor at SDSU in the School of Social Work, with a focus on Community Development within the Macro Social Work track. She received her BA (Psychology), MSW, and PhD in Social Welfare at UCLA, and served as a Social Welfare Field Faculty member at UCLA for over four years. For the past five years, she was an Assistant Professor at UC San Diego in the Division of Global Public Health, School of Medicine and a National Institute on Drug Abuse T32 Postdoctoral Fellow. As an affiliated core faculty of the Center on Gender Equity, and Health and a Fordham University Research Ethics Training Institute Alumni Fellow, she has over 25 publications on women and men involved in sex trade and sex trafficking in the Philippines, Russia, and Latin America. She is currently a Principal Investigator and Co-Investigator on several federally and privately funded grants. She is currently a recipient of a 5-year National Institutes on Health (National Institute on Drug Abuse) K01 grant and received an NIH Fogarty International – University of California Global Health Institute GloCal award, both examining community mobilization and its potential to reduce HIV/STI risk and violence among substance using females in the sex trade in Tijuana, Mexico.  Recently, she served as a Technical Review Committee member for the United Nations Population Fund (UNFPA), reviewing studies on the prevalence of violence against women in the Pacific.  She is also a Co-investigator for a nationwide U.S.-based Kaiser-funded community-based HIV Test and Treat Initiative and on a National Institute on Mental Health R01 Men Count study of HIV case management interventions with Black men in Washington DC. She is also involved in a study of national sexual violence prevention through sports culture via the California Coalition Against Sexual Assault, and in a critical review of the effectiveness of batterer intervention programs. She holds a California License in Clinical Social Work with over 7 years experience working in direct practice with women, men, and communities impacted by HIV/AIDS in Los Angeles County. She is currently on the Board of Directors for Christie’s Place (transforming the lives of women affected by HIV/AIDS in San Diego).

Mentored Research Project (MRP) Title
Social and structural constraints on disclosure and informed consent with female sex workers and their managers in the Philippines

Abstract
This qualitative study explored the ethical issues of female sex workers' (FSWs) participation in HIV prevention research. Twenty female bar/spa workers and 10 venue managers in the Philippines underwent individual semi-structured interviews; three community advisory board meetings informed the study design and interpretation of findings. Results: Informed consent was constrained by perceived government coercion and skepticism that research results would translate into community benefits. Disclosure was constrained by distrust in confidentiality and perceived intrusiveness of survey questions. FSWs and managers were frustrated by the government's inability to stop police from using condoms as evidence of prostitution. Findings suggest HIV interventions move beyond didactic prevention workshops to include FSWs in intervention design and implementation, and to reduce social and structural constraints on participation.

MRP Publications
Urada, L. A., & Simmons, J. (2014). A Collaborative Methodology for Investigating the Ethical Conduct of Research on Female Sex Workers in the Philippines. Journal of Empirical Research on Human Research Ethics, 9(1), 41-45. https://doi.org/10.1525/jer.2014.9.1.41

Urada, L. A., & Simmons, J. (2014). Social and Structural Constraints on Disclosure and Informed Consent for HIV Survey Research Involving Female Sex Workers and Their Bar Managers in the Philippines. Journal of Empirical Research on Human Research Ethics, 9(1), 29-40. https://doi.org/10.1525/jer.2014.9.1.29

Urada, L.A., Halterman, S., Raj, A., Tsuyuki, K., Pimentel-Sumbulan, K., and & Silverman, J.G.