This year’s theme for World AIDS Day, which has been recognized each year on December 1st since 1988, is “End Inequalities. End AIDS.” World Aids Day is an opportunity to raise awareness, commemorate those who have lost their lives, and celebrate key advances in the HIV/AIDS prevention services, access to treatment, and care.
As of 2020, there were an estimated 37,700,000 people living with HIV and 1,500,000 people newly infected. Although significant progress has been made and 73% of people living with HIV received lifelong antiretroviral therapy (ART) in 2020, HIV remains to be a global health crisis affecting millions. The COVID-19 pandemic has presented new challenges to access of services and exacerbated existing inequalities among those at risk for and living with HIV and AIDS. The World Health Organization (WHO) and its partners are asking for the public to re-commit to end HIV, tackle HIV and COVID-19 together, focus on equality, and to concentrate and reach those left behind including diverse groups of marginalized people in each country, but especially those in countries and populations that are not benefitting from the global response to HIV and AIDS.
Research from the Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute
The Fordham University HIV and Drug Abuse Prevention Research Ethics Training Institute (RETI), directed by Celia Fisher, PhD, encourages studies highlighting the various voices in HIV research, including those of patients, research participants, physicians, researchers, and communities.
In honor of World AIDS Day, The Ethics & Society Blog has compiled HIV ethics research from trainees of the Institute, as well as research on areas, populations, and comorbidities related to HIV that are still in need of research attention below. Please visit the “HIV and Drug Abuse Ethics Collection” on the Research Ethics and Health Disparities Online Resource Center to read more about our trainees’ HIV research
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC6774386/.
keywords: financial compensation; coercion; trust; reciprocity; PWID; Puerto Rico
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC6281254/#sec005title
keywords: trust/mistrust, community health research, HIV/AIDS prevention and treatment, motivation, recruitment, Puerto Rico
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 Infections. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7653680/
keywords: MSM, TMSM, LGBTQ, HIV/AIDS prevention and treatment, sexually transmitted infections
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539627/.
keywords: sampling, data integrity, privacy, researcher responsibility, social media, Internet research ethics
Bragard, E. Macapagal, K., Mustanski, B. & Fisher, C. B. (2020). Association of CAI Vulnerability and Sexual Minority Victimization Distress Among Adolescent Men Who Have Sex With Men. Psychology of Sexual Orientation and Gender Diversity. https://doi.org/10.1037/sgd0000436.
keywords: AMSM, LGBTQ youth, HIV/AIDS prevention and treatment, condomless anal intercourse (CAI), SMV
Brown, B., Taylor, J. & Fisher, C.B. (2021). Mitigating Isolation of People Aging With HIV during the COVID-19 Pandemic. Public Health Reports. Volume 136, 394 – 396. https://doi.org/10.1177/00333549211015661.
keywords: People living with HIV (PLWH), vulnerable populations, virtual villages, mHealth
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/.
keywords: HIV/AIDS prevention and treatment, Black sexual minority men (BSMM), racial/ethnic minorities, research ethics, LGBTQ, engagement, recruitment, sexual health, telehealth
Fisher, C. B., Bragard, E. & Bloom, R. (2020). Ethical considerations in HIV eHealth intervention research: Implications for informational risk on recruitment, data maintenance, and consent procedures. Curr HIV/AIDS Rep. 2020 May 2. https://doi:10.1007/s11904-020-00489-z.
keywords: mobile research, informed consent, privacy and confidentiality, research ethics, online recruitment, HIV/AIDS prevention and treatment
Fisher, C.B., Fried, A. L., Desmond, M., Macapagal, K., & Mustanski, B. (2018). Perceived barriers to HIV prevention services for transgender youth. LGBT Health. Aug/Sep;5(6):350-358. https://doi.org/10.1089/lgbt.2017.0098.
keywords: adolescents, health disparities, HIV/AIDS, prevention, stigma, transgender.
Fisher, C. B., Fried, A. L., Puri, L. I., Macapagal, K. & Mustanski, B. (2018). Patient-provider communication barriers and facilitators to HIV and STI preventive services for adolescent MSM. AIDS & Behavior, 22, 3417-3428. PMID: 29546468. https://doi.org/10.1007/s10461-018-2081-x.
keywords: adolescent men who have sex with men (AMSM), sexually transmitted infections, HIV/AIDS prevention and treatment, stigma, trust/mistrust, discrimination
Fisher, C. B., Puri, L. I., Macapagal, K., Feuerstahler, L., Ahn, J. R., & Mustanski, B. (2021). Competence to consent to oral and injectable PrEP trials among adolescent males who have sex with males. AIDS & Behavior, 25, 1606-1618. http://link.springer.com/article/10.1007/s10461-020-03077-9
keywords: AMSM, sexual minority males, pre-exposure prophylaxis, informed consent, HIV/AIDS prevention and treatment
Fisher, C.B., Puri, L. I. Macapagal, K., & Mustanski, B. (2018) “Free Testing and PrEP without Outing Myself to Parents:” Motivation to Participate in Oral and Injectable PrEP Clinical Trials among Adolescent Men who have Sex with Men. PLoS ONE 13(7): e0200560 https://doi.org/10.1371/journal.pone.0200560.
keywords: HIV/AIDS prevention and treatment, AMSM, Truvada, institutional review board (IRB), guardian disclosure, privacy and confidentiality
Fletcher, F. E., Fisher, C. B., Buchberg, M.K., Floyd, B., Hotton, A., Ejioba, A.,& Donenberg, G. R. (2018). “Where Did This [PrEP] Come From?” African American Mother/Daughter Attitudes Towards Adolescent Pre-Exposure Prophylaxis (PrEP) Utilization and Clinical Trial Participation. Journal of Empirical Research on Research Ethics, 13(2), 173-184. PMID: 29781706. https://doi.org/10.1177/1556264618755919.
keywords: African American women and female adolescents, sexual and gender minorities, informed parent-child research decision making, HIV/AIDS prevention and treatment, adolescent clinical trial participation
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC7509837/
keywords: research ethics, health inequities, women living with HIV (WLWH), diverse research populations, stigma, racial/ethnic minorities
Fonner, V. A., Ntogwisangu, J., Hamidu, I., Joseph, J., Fields, J., Evans, E., Kilewo, J., Bailey, C., Goldsamt, L., Fisher, C. B., O’Reilly, K. R., Ruta, T., Mbwambo, J., & Sweat, M. D. (2021). “We are in this together:” dyadic-level influence and decision-making among HIV serodiscordant couples in Tanzania receiving access to PrEP. BMC public health, 21(1), 720. https://bmcpublichealth.biomedcentral.com/track/pdf/10.1186/s12889-021-10707-x.pdf.
keywords: HIV/AIDS prevention and treatment, pre-exposure prophylaxis (PrEP), dyad, recruitment, informed consent, intervention implementation, sub-Saharan Africa
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC5797417/.
keywords: HIV/AIDS prevention and treatment, vulnerable populations, racial/ethnic minorities, agency, violence and exploitation, substance use
Gray, A., Macapagal, K., Mustanski, B., & Fisher, C. B. (2019). Surveillance Studies Involving HIV Testing Are Needed: Will At-Risk Youth Participate? Health Psychology, https://doi: 10.1037/hea0000804.
keywords: HIV/AIDS prevention and treatment, LGBTQ youth, health disparities, adolescent males who have sex with males (AMSM), racial/ethnic minorities, sexual minority youth
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 substance use and incarceration. Criminology and Criminal Justice. https://doi.org/10.1177/17488958211005820
keywords: research ethics, racial/ethnic minorities, anti-oppressive research, substance use, stigma, trauma
Hubach, R. D., O’Neil, A., Stowe, M., Giano, Z., Curtis, B., & Fisher, C. B. (2020). “Out here the rainbow has mud on it”: 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. https://link.springer.com/article/10.1007%2Fs10508-019-01612-x.
keywords: privacy, MSM, mHealth, EMA, HIV/AIDS prevention and treatment
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC6594889/.
keywords: men who have sex with men (MSM), HIV/AIDS, sexually transmitted infections (STIs), LGBTQ
Matson, M. Macapagal, K ,Kraus, A. Coventry, R. & Bettin, E. & Fisher, C.B. & Mustanski,B. (2019). Sexual and Gender Minority Youth’s Perspectives on Sharing De-identified Data in Sexual Health and HIV Prevention Research. Sexuality Research and Social Policy, 16, 1 – 11. https://doi: 10.1007/s13178-018-0372-7
keywords: adolescents, participant perspectives, HIV/AIDS prevention and treatment, research ethics, gender identity, LGBTQ youth
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/.
keywords: collective sex venues (CSV), HIV/STI
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC6076845/.
keywords: HIV/AIDS prevention and treatment, Tanzania, social networks, popular opinion leader (POL)
Mustanski, B., Macapagal, K., Thomann, M., Feinstein, B. A., Newcomb, M. E., Motley, D. & Fisher, C. B. (2018). Parents’ Perspectives about Adolescent Boys’ Involvement in Biomedical HIV Prevention Research. Archives of Sexual Behavior. 46, 1 – 13. PubMed: 28875351. https://doi.org/10.1007/s10508-017-1035-0.
keywords: HIV/AIDS prevention and treatment, pre-exposure prophylaxis (PrEP), sexual and gender minorities, youth, research ethics, adolescent men who have sex with men (AMSM)
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 research, 56(4-5), 593-603.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6310663/.
keywords: men who have sex with men (MSM), institutional review boards (IRB), research ethics, vulnerable populations, privacy and confidentiality
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC6231959/.
keywords: intimate partner violence, HIV/AIDS, research ethics, African American Women, vulnerable populations, stigma
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 journal, 17(1), 41. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7288402/
keywords: harm reduction, HIV/AIDS, mHealth, antiretroviral therapy (ART), men who have sex with men (MSM), research ethics, vulnerable populations
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 Health. https://doi.org/10.1080/09581596.2021.1918329.
keywords: MSM, racial/ethnic minorities, HIV/AIDS prevention and treatment, vulnerable populations, youth and young adults
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC6053617/
Keywords: confidentiality, trust/mistrust, MSM, LGBTQ, social networking, HIV/AIDS prevention and treatment
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC5810313/.
keywords: MSM, HIV/AIDS prevention and treatment, treatment as prevention (TasP), LGBTQ, stigma
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 Medicine, 97(2), 306–316. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7101455/.
keywords: research ethics, PWUD, people who inject drugs (PWID), MSM, GMA, addiction and substance abuse
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC8035136/.
keywords: HIV/AIDS prevention and treatment, informed consent, fuzzy-trace theory, recruitment, research ethics, decision-making
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC5742296/.
keywords: health care, HIV prevention, India, prevention of mother-to-child transmission of HIV, women
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://www.ncbi.nlm.nih.gov/pmc/articles/PMC5884725/.
keywords: social networks, rural, substance use, HIV, hepatitis C, Appalachia, opioid
Applications for summer training and $30,000 mentored research grant for early career HIV and drug abuse prevention investigators at the HIV and Drug Abuse Prevention Research Ethics Training Institute is now accepting applications for its 2021 session taking place in-person in NYC July 11-18! Please visit our website or contact the Program Administrator Rimah Jaber (ethicsinst@fordham.edu) for more information. The deadline for applications is February 23, 2022.
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