HIV, Drugs, and Prisoners: Barriers to Epidemiologic and Intervention Research

This project is funded by the National Institute on Drug Abuse (Grant #R01DA020357)

For additional information and project updates, please visit our website:
CBHRS Research Ethics Projects

The United States has the highest rate of incarceration in the world. In 2011, 2.2 million individuals were held in state or federal prisons and local jails (Bureau of Justice Statistics, 2012). Individuals living with HIV/AIDS are disproportionately represented in the U.S. incarcerated population, with the rate of HIV/AIDS much higher in prisons than in the general population (Bureau of Justice Statistics, 2008). Given the high rate of individuals with HIV/AIDS who pass through the U.S. correctional system, many HIV/AIDS care providers, researchers, and prisoner advocates view incarceration as an opportunity to provide HIV prevention, testing, counseling, education, research, and treatment to an otherwise underserved group of individuals.

Research ethics and federal laws about human subject protections have evolved to protect research participants in general, and vulnerable groups in particular. According to federal law, vulnerable groups include pregnant women, fetuses and neonates, children, and prisoners; (CFR 45 Part 46). According to ethicists, vulnerable groups also include individuals who suffer from impairment due to substance abuse, mental illness, stigmatized medical illness (e.g., HIV/AIDS), and other debilitating disorders. Research with prisoners, especially those with added vulnerabilities of HIV/AIDS, poses ethical challenges and responsibilities beyond those required for research with less vulnerable populations. Despite the growth in and urgent need for HIV/AIDS research in correctional settings, there have been no empirical studies of the interpretation and application of ethical principles and regulatory safeguards by researchers and IRBs involved in HIV/AIDS prison research.

“There are many examples of prisoners being used in research that did not have their best interests in mind. That being said, there are many conditions that disproportionably impact upon the incarcerated, such as chronic viral Hepatitis and HIV disease that would make them excellent potential beneficiaries of involvement in research studies, but because of . . .at least partially because of restrictions that are put in place to protect the patients, some researchers have, I believe, decided to not pursue inclusion of prisoners in studies.” (Prison Administrator)

In 2006, the Institute of Medicine (IOM) published a consensus report on "Ethical Considerations for Research involving Prisoners". The report states that the structure of federal regulations and oversight has improved the ethical oversight of research, but its restrictions have also limited research that is needed to address health-related issues. The IOM acknowledged a need for empirical data about ethical, policy, and institutional challenges to research in correctional settings.

This project focuses on 1) how researchers and IRB members interpret and apply ethical principles of autonomy, justice, and beneficence in HIV/AIDS research with prisoners; 2) how researchers and IRB members interpret and apply regulatory safeguards for HIV/AIDS research with prisoners; 3) ways in which policies and structural environments of correctional systems (including prisons and jails) create ethical challenges that must be addressed by HIV/AIDS researchers and IRBs; and 4) ways in which ethical safeguards and oversight affect the growth of HIV/AIDS research with prisoners. This project used sequential qualitative and quantitative phases to examine ethical challenges, responsibilities, and solutions regarding the conduct and oversight of HIV/AIDS research with prisoners, particularly prisoners with drug abuse histories.

In Phase 1, 92 individuals with experience in HIV/AIDS research with prisoners were interviewed. The sample included 30 researchers, 15 prison administrators, 15 research ethicists, 16 IRB members or chairs and 16 IRB prisoner representatives. Interviews were audio-recorded, transcribed and analyzed for themes using NVivo software for qualitative data analysis. In Phase 2, an online quantitative survey was developed from the Phase 1 qualitative findings. This survey was further refined through cognitive interviewing and pilot testing. In Phase 3, the quantitative survey was conducted with a national sample of HIV/AIDS researchers and IRB members, with 960 HIV/AIDS researchers and IRB members completing the survey.

The project will result in increased understanding of the ethical challenges and solutions in HIV/AIDS research with prisoners, with the goal of reducing barriers to much needed epidemiologic and intervention research focused on HIV/AIDS and prisoners.

Findings

Johnson, M. E., Kondo, K. K., Brems, C., & Eldridge, G. D. (2015). HIV/AIDS research in correctional settings: A difficult task made even harder? Journal of Correctional Health Care, 21(2), 101-111. Abstract

Kondo, K. K., Johnson, M. E., Ironside, E. F., Brems, C., Eldridge, G. D. (2014). HIV/AIDS research in correctional settings: Perspectives on training needs from researchers and IRB members. AIDS Education and Prevention, 26(6), 565-576.

Ironside, E. F., Kondo, K. K., Johnson, M. E., & Eldridge, G. D. (2014, April). Training needs for HIV/AIDS correctional research. Paper presented at the 94th Annual Convention of the Western Psychological Association, Portland, OR.

Johnson, M. E., Brems, C., Hanson, B. L., Corey, S. L., Eldridge, G. D., & Mitchell, K. (2014). Conducting ethical research with correctional populations: Do researchers and IRB members know the federal regulations? Research Ethics, 10, 6-16.

Romanik, S., Hanson, B., Corey, S., Johnson, M., Eldridge, G., Brems, C. (2012, October). Conducting ethical research with correctional populations: Do researchers and IRB members know the federal regulations? Poster presented at the 140th Annual Meeting of the American Public Health Association, San Francisco, CA. (PDF, 293KB)

Eldridge, G. E., Robinson, R.V., Corey, S., Brems, C., & Johnson, M.E. (2012). Ethical challenges in conducting HIV/AIDS research in correctional settings. Journal of Correctional Healthcare, 18, 309-318.

Eldridge, G. E., Johnson, M. E., Brems, C., & Corey, S. L. (2011). Ethical challenges in conducting psychiatric or mental health research in correctional settings. AJOB Primary Research, 2, 42-51.

Zack, B. Hanson, B., Corey, S., Brems, C., Eldridge, G., & Johnson, M. (2011, March). To volunteer or not to volunteer: Motivations for participating in HIV/AIDS research in correctional settings. Presention at the 4th Academic & Health Policy Conference on Correctional Health, Boston, MA. (.pdf)

Zack, B., Romanik, S., Corey, S., Eldridge, G., Brems, C., & Johnson, M. (2011, March). Pros and cons: Risks and Benefits of participating in HIV/AIDS research in correctional settings. Poster presented at the 4th Academic & Health Policy Conference on Correctional Health, Boston, MA. (PDF, 783KB)

Eldridge, G. E., Brems, C., Corey, S., & Johnson, M. E. (2010, December). Incarcerated individuals and HIV/AIDS research: Incentives and monetary compensation for research participation. Poster presented at the PRIM&R 2010 Advancing Ethical Research Conference, San Diego, CA. (PDF, 2.43MB)

Corey, S., Eldridge, G. E., Brems, C., & Johnson, M. E. (2010, December). Incarcerated populations: Recommendations for conducting HIV/AIDS research. Poster presented at the PRIM&R 2010 Advancing Ethical Research Conference, San Diego, CA. Accepted for moderated abstract discussion. (PDF, 304KB)

Boschma-Wynn, R. V., Brems, C., Eldridge, G. E., Corey, S., & Johnson, M. E. (2010, December). And justice for all: Equitable access to benefits and protection from harm in HIV/AIDS research with vulnerable populations. Poster presented at the PRIM&R 2010 Advancing Ethical Research Conference, San Diego, CA. Accepted for moderated abstract discussion. (PDF, 4.45MB)

Corey, S. & Whitmore, C. (2010, May). Recommendations for conducting HIV-related research in correctional settings. Poster presented at the 2010 University of Alaska Biomedical Research Conference, Anchorage, AK. (PDF, 178KB)

Robinson, R. & Corey, S. (2010, May). Ethical challenges in conducting HIV-related research in correctional settings. Poster presented at the 2010 University of Alaska Biomedical Research Conference, Anchorage, AK. (PDF, 135KB)




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