Empirical and Theoretical Articles and Resources
in HIV Prevention and Use Research Ethics
Please click on the links below to view suggested articles and chapters on each topic.
Articles are organized by subject matter and are distinguished between empirical and theoretical.
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Empirical research Ethics on hiv risk and drug use research
• Aldridge, J. & Charles, V. (2008). Researching the intoxicated: Informed consent
implications for alcohol and drug research. Drug and Alcohol Dependence, 93, 191-196.
• Anderson, E. E. & DuBois, J. M. (2007). The need for evidence-based research ethics: A
review of the substance abuse literature. Drug and Alcohol Dependence, 86, 95-105.
• Anspach, R. R, & Mizrachi, N. (2006). The field worker’s fields: Ethics, ethnography and
medical sociology. Sociology of Health & Illness, 28(6), 713-731.
• Barnett, P. G., Sorensen, J. L., Wong, W., Haung, N., & Hall, S. M. (2009). Effect of
incentives for medication adherence on health care use and costs in methadone
patients with HIV. Drug andAlcohol Dependence, 100, 115-121.
• Bell, K. & Salmon, A. (2011). What women who use drugs have to say about ethical
research: Findings of an exploratory qualitative study. Journal of Empirical Research on
Human Research Ethics, 6(4), 84-98.
• Borek, N., Allison, S., & Caceres, C. (2010). Involving vulnerable populations of youth in
HIV prevention clinical research. Journal of Acquired Immune Deficiency Syndromes,
54, S43-S49.
• Brody, J. L. & Waldron, H. B. (2000). Ethical issues in research on the treatment of
adolescent substance abuse disorders. Addictive Behaviors, 25(2), 217-228.
• Brown, E. J. & Hill, M. A. (2005). Perceptions of HIV risks and prevention strategies by
rural and small city African Americans who use cocaine: Views from the inside. Issues
in Mental Health Nursing, 26, 359-377.
• Calsyn, R. J., Klinkenberg, W. D., Morse, G. A., Miller, J., & Cruthis, R. (2004).
Recruitment, engagement, and retention of people living with HIV and co-occurring
mental health and substance use disorders. AIDS Care, 16(Supp. 1), S56-S70.
• Colon, R. A., Deren, S., Guarino, H., Mino, M., & Kang, S. (2010). Challenges in recruiting
and training drug treatment patients as peer outreach workers: A perspective from the
field. Substance Use & Misuse, 45, 1892-1908.
• DuBois, J. M., O’Leary, C. C., & Cottler, L. B. (2009). The attitudes of females in drug
court toward additional safeguards in HIV prevention research. Prevention Science, 10,
345-352.
• Dunlap, E., Johnson, B. D., & Randolph, D. (2009). Ethical and legal dilemmas in
ethnographic field research: Three case studies of distressed inner-city families. In D.
Buchanan, C. B. Fisher, & L. Gable (Eds.), Research with high-risk populations:
Balancing science, ethics, and law (pp. 189-206). Washington, DC: APA Books.
• DuVal, G. & Salmon, C. (2004). Research note: Ethics of drug treatment research with
court-supervised subjects. The Journal of Drug Issues, 34(4), 991-1005.
• Festinger, D. S., Marlowe, D. B., Dugosh, K. L., Croft, J. R., & Arabia, P. L. (2008).
Higher magnitude cash payments improve research follow-up rates without increasing
drug use or perceived coercion. Drug and Alcohol Dependence, 96, 128-135.
• Fisher, C. B. (2011). Addiction research ethics and the Belmont principles: Do drug users
have a different moral voice? Substance Use & Misuse, 46, 728-741
• Fisher, C. B. (2010). Enhancing HIV vaccine trial consent preparednessamong street
drug users. Journal of Empirical Research on Human Research Ethics, 5, 65-80.
• Fisher, C. B. (2004). Ethics in drug abuse and related HIV risk research. Applied
Developmental Science, 8(2), 91-103.
• Fisher, C. B. (2003). Adolescent and parent perspectives on ethical issues in youth drug
use and suicide survey research. Ethics & Behavior, 13(4), 303-332.
• Fisher, C. B., Oranksy, M., Mahadevan, M., Singer, M., Mirhej, G., & Hodge, G. D.
(2009). Do drug abuse researchers have a duty to protect third parties from HIV
transmission? Moral perspectives of street drug users. In D. Buchanan, C. B. Fisher, &
L. Gable (Eds.), Research with high-risk populations: Balancing science, ethics, and
law (pp. 189-206). Washington, DC: APA Books.
• Fisher, C. B., Oransky, M., Mahadevan, M., Singer, M., Mirhej, G., & Hodge, D. (2008).
Marginalized populations and drug addiction research: Realism, mistrust, and
misconception. IRB: Ethics & Human Research, 30, 1-9.
• Forman, R. F., Bovasso, G., Woody, G., McNicholas, L., Clark, C., Royer-Malvestuto, C.,
& Weinstein, S. (2002). Staff beliefs about drug abuse clinical trials. Journal of
Substance Abuse Treatment, 23, 55-60.
• Fry, C. & Dwyer, R. (2001). For love or money? An exploratory study of why injecting drug
users participate in research. Addiction, 96, 1319-1325.
• Iguchi, M. Y., London, J. A., Forge, N. G., Hickman, L., Fain, T., Reihman, K. (2002).
Elements of well-being affected by criminalizing drug use. Public Health Reports,
17(Supp 1), 146-150.
• Kapp, S. A. (2000) Pathways to Prison: Life Histories of Former Clients of the Child
Welfare and Juvenile Justice Systems. Journal of Sociology & Social Welfare, 27,
63-74.
• Kleinig, J. (2004). Ethical issues in substance use intervention. Substance Use & Misuse,
39(3), 369-398.
• Lucke, J. C. & Hall, W. D. (2012). Under what conditions is itethical to offer incentives to
encourage drug-using women to use long-acting forms of contraception? Addiction, doi:
10.1111/j.1360-0443.2011.03699.x
• Meyers, K., Metzger, D. S., Navaline, H., Woody, G. E., & McLellan, A. T. (1994). HIV
vaccine trials: Will intravenous drug users enroll? American Journal of Public Health,
84(5), 761-766.
• Oransky, M., Fisher, C. B., Mahadevan, M., & Singer, M. (2009). Barriers and
opportunities for recruitment for nonintervention studies on HIV risk: Perspectives of
street drug users. Substance Use & Misuse, 44, 1642-1659.
• Rajabiun, S., Mallinson, R. K., McCoy, K., Coleman, S., Drainoni, M., Rebholz, C., &
Holbert, T. (2007). “Getting me back on track”: The role of outreach interventions in
engaging and retaining people living with HIV/AIDS in medical care. AIDS Patient Care
and STDs, 21(Supp. 1), S20-S29.
• Rhodes, T., Singer, M., Bourgois, P., Friedman, S. R., & Strathdee, S. A. (2005). The
social structural production of HIV risk among injecting drug users. Social Science &
Medicine, 61, 1026-1044.
• Roberts, L. W. (2002). Addiction and consent. The American Journal of Bioethics, 2(2),
58-60.Scott, G. (2008). “They got their program, and I got mine”: A cautionary tale
concerning the ethical implications of using respondent-driven sampling to study
injection drug users. International Journal of Drug Policy, 19, 42-51.
• Rojas, N. L., Sherrit, L., Harris, S., & Knight, J. R. (2008). The role of parental consent in
adolescent substance use research. Journal of Adolescent Health, 42, 192-197.
• Sarang, A., Rhodes, T., Sheon, N., & Page, K. (2010). Policing drug users in Russia: Risk
fear, structural violence. Substance Use & Misuse, 45, 813-864
• Scott, C. K. & White, W. L. (2005). Ethical issues in the conduct of longitudinal studies of
addiction treatment. Journal of Substance Abuse Treatment, 28, S91-S101.
• Simmons, J. (2006). The interplay between interpersonal dynamics, treatment barriers,
and larger social forces: An exploratory study of drug-using couples in Hartford, CT.
Substance Abuse Treatment, Prevention, and Policy, 1(12), open access.
• Simmons, J. & Koester, K. (2003). Hidden injuries of research on social suffering among
drug users. Practicing Anthropology, 25(3), 53-57.
• Simmons, J. & Singer, M. (2006). I love you…and heroin: Care and collusion among
drug-using couples. Substance Abuse Treatment, Prevention, and Policy, 1(7), open
access.
• Singer, M. (2009). Trucking between the bailiwicks: Multidisciplinarity, SAVA, and
synergies in health (Chapter 2). In M. Singer, Introduction to syndemics: A critical
systems approach to public and community health. (pp. 27-52). San Francisco:
Josey-Bass.
• Slomka, J., Ratliff, E. A., McCurdy, S. A., Timpson, S., & Williams, M.L. (2008).
Decisions to participate in research: Views of underserved minority drug users with or
at risk for HIV. AIDS Care, 20(10), 1224-1232.
• Slomka, J., Ratliff, E. A., McCurdy, S., Timpson, S., & Williams, M. L. (2008).
Perceptions of risk in research participation among underserved minority drug users.
Substance Use and Misuse, 43(11), 1640-1652
• Slomka, J., McCurdy, S., Ratliff, E. A., Timpson, S., & Williams, M. L. (2007).
Perceptions of financial payment for research participation among African-American
drug users in HIV studies. Journal of General Internal Medicine, 22, 1403-1409.
• Stirley, C. L. W., Callahan, C., & Cottler, L. B. (2008). Enrolling, retaining, and benefiting
out-of-treatment drug users in intervention research. Journal of Empirical Research on
Human Research Ethics, 3(3), 19-25.
• Timmermans, S. & McKay, T. (2009). Clinical trials as treatment option: Bioethics and
health care disparities in substance dependency. Social Science & Medicine, 69,
1784-1790.
• Uuskula, A., Johnston, L. G., Raag, M., Trummal, A., Talu, A., & Des Jarlais, D. C.
(2010). Evaluating recruitment among female sex workers and injecting drug users at
risk for HIV using respondent-driven sampling in Estonia. Journal of Urban Health:
Bulletin of the New York Academy of Medicine, 87(2), 304-317.
• Varas-Diaz, N., Negron, S. S., Neilands, T. B., Bou, F. C., & Rivera, S. M. (2010).
Stigmatization of illicit drug use among Puerto Rican health professionals in training.
Puerto Rico Health Sciences Journal, 29(2), 109-116.
• Wolfe, D., & Cohen, J. (2010). Human rights and HIV prevention treatment and care for
people who inject drugs: Key principles and research needs. Journal Acquired Immune
Deficiency Syndrome, 55, S56-S62.
• Yin, L., Zhang, Y., Qian, H., Rui, B., Zhang, L., Zhu, J., … Shao, Y. (2008). Willingness
of Chinese injection drug users to participate in HIV vaccine trials. Vaccine, 26,
762-768.
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HIV Prevention Ethics Historical Landmarks and Ethical Principles
• Angell, M. (1997). The ethics of clinical research in the third world. New England Journal
of Medicine, 337, 847-849
• Annas, G. (2009). Global clinical trials and informed consent. New England Journal of
Medicine, 360, 2050 – 2053.
• Ballantyne, A. (2005) HIV international clinical research: Exploitation and risk.Bioethics,
19, 476-491.
• Fields, L. & Kaplan, C. (2011). Opt-out HIV testing: An ethical analysis of women’s
reproductive rights. Nursing Ethics, 18, 734-742.
• Fisher, C. B. (2011). Addiction research ethics and the Belmont principles: Do drug users
have a different moral voice? Substance Use & Misuse, 46, 728-741
• Fisher, C. B. (2004). Ethics in drug abuse and related HIV risk research. Applied
Developmental Science, 8(2), 91-103.
• IJsselmuiden, C. B., Kass, N. E., Sewankambo, K. N., & Lavery, J. V. (2010). Evolving
values in ethics and global health research. Global Public Health, 5, 154-163.
• Kleinig, J. (2004). Ethical issues in substance use intervention. Substance Use & Misuse,
39(3), 369-398.
• Loue, S. & Pike,E. C. (2010). Chapt. 1. Human Rights, International Guidelines & HIV
Research. In Case studies in ethics and HIV research (pp. 1 – 14) NY: Springer
• Loue, S. & Pike, E. C. (2010). Chapt. 2. U.S. regulations and HIV-related research. In
Case studies in ethics and HIV research (pp 15 – 22). NY: Springer
• Macklin, R. (1998). Ethical relativism in a multicultural society. Kennedy Institute of
Ethics Journal, 8(1), 1-22.
• Macklin, R. (1999). Moral progress and ethical universals. Against relativism: Cultural
diversity and search for ethical universals in medicine (250-274). NY: Oxford University
Press.
• Rennie, S., & Sugarman, J. (2010). Developing ethics guidance for HIV prevention
research: The HIV Prevention Trials Network approach. J. Med Ethics 36, 810-815.
• U.S. Office of Human Subjects Research (1979). The Belmont report: Ethical principles
and guidelines for the protection of human subjects of research. Retrieved from
http://ohsr.od.nih.gov/guidelines/belmont.html |
Empirical Research on Research Ethics Methodologies
• Anderson, E. E. & DuBois, J. M. (2007). The need for evidence-based research ethics: A
review of the substance abuse literature. Drug and Alcohol Dependence, 86, 95-105.
• Danis, M., Hanson, L., & Garrett, J. M. (2010). Experimental methods. In J. Sugarman &
D. Sulmasy (Eds.), Methods in Medical Ethics (2nd ed; pp. 251-272). Washington, DC:
Georgetown University Press.
• Dunlap, E., Johnson, B. D., & Randolph, D. (2009). Ethical and legal dilemmas in
ethnographic field research: Three case studies of distressed inner-city families. In D.
Buchanan, C. B. Fisher,& L. Gable (Eds.), Research with high-risk populations:
Balancing science, ethics, and law (pp. 189-206). Washington, DC: APA Books.
• Haverkamp, B. E. (2005). Ethical perspectives on qualitative research in applied
psychology. Journal of Counseling Psychology, 52(2), 146-155.
• Loue, S. & Pike, E. C. (2010). Chapt. 8 Clinical trials. In Case studies in ethics and HIV
research (pp 103-124). NY: Springer
• Loue, S. & Pike, E. C. (2010). Chapt. 9. Observational studies. In Case studies in ethics
and HIV research (pp 137-150) NY: Springer
• Loue, S. & Pike, E. C. (2010). Chapt.10. Behavioral intervention studies In Case studies
in ethics and HIV research (pp. 168-175) NY: Springer
• Marshall, P. A. & Koenig, B. A. (2010). Ethnographic methods. In J. Sugarman & D.
Sulmasy (Eds.),Methods in Medical Ethics (2nd ed; pp. 215-232). Washington, DC:
Georgetown University Press.
• Pearlman,R. A. & Starks, H. E. (2010). Quantitative Surveys. In J. Sugarman & D.
Sulmasy (Eds.), Methods in Medical Ethics (2nd ed; pp. 233-250). Washington, DC:
Georgetown University Press.
• Perez-y-Perez, M. & Stanley, T. (2011). Ethnographic intimacy: Thinking through the
ethics of social research in sex worlds. Sociological Research Online, 16(2), 13.
• Ponterotto, J. G. (2010). Qualitative research in multicultural psychology: Philosophical
underpinnings, popular approaches, and ethical considerations. Cultural Diversity and
Ethnic Minority Psychology, 16(4), 581-589.
• Sugarman, J., Kass, N., & Faden, R. (2009). Categorizing empirical research in bioethics:
Why count the ways? The American Journal of Bioethics, 9(6-7), 66-103.
• Sulmasy, D. P. & Sugarman, J. (2010). The many methods of medical ethics: (Or,
thirteen ways of looking at a blackbird). In J. Sugarman & D. Sulmasy (Eds.), Methods
in Medical Ethics (2nd ed; pp. 3-20). Washington, DC: Georgetown University Press.
• Taylor, H. A., Hull, S. C., & Kass, N. E. (2010). Qualitative methods. In J. Sugarman & D.
Sulmasy (Eds.), Methods in Medical Ethics (2nd ed; pp. 193-214). Washington, DC:
Georgetown University Press.
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Referrals and Post-Trial Provision of Treatment
in HIV Prevention Research
• Barsdorf, N., Maman, S., Kass, N., & Slack, C. (2009). Access to treatment in HIV
prevention trials: Perspectives from a South African community. Developing World
Bioethics, 10(2), 78-87.
• Campbell, C., Nair, Y., Maimane, S., Sibiya, W., & Gibbs, A. (2011). “Dissemination as
intervention”: Building local HIV competence through the report back of research
findings to a South African rural community. Antipode. doi: 10.1111/j.1467-8330.2011.
00938
• Gifford, A. L., Cunningham, W. E., Heslin, K. C., Andersen, R. M., Nakazono, T., Lieu, D.
K., … Bozette, S. A. (2002). Participation in research and access to experimental
treatments by HIV-infected patients. New England Journal of Medicine, 346(18),
1373-1382.
• Haire, B. G. (2011). Because we can: Clashes of perspective over researcher obligation in
the failed PrEP trials. Developing World Bioethics, 11(2), 63-74.
• Kukla, R. (2007). Resituating the principle of equipoise: Justice and access to care in
non-ideal conditions. Kennedy Institute of Ethics Journal, 17(3), 171-202.
• Lairumbi, G. M., Michael, P., Fitzpatrick, R., & English, M. C. (2012). Forms of benefit
sharing in global health research undertaken in resource poor settings: A qualitative
study of stakeholders’ views in Kenya. Philosophy, Ethics, and Humanities in
Medicine, 7, doi:10.1186/1747-5341-7-7
• Lo, B., Padian, N., & Barnes, M. (2007). The obligation to provide antiretroviral treatment
in HIV prevention trials. AIDS, 21, 1229-1231.
• Macklin, R. (2006). Changing the presumption: Providing ART to vaccine research
participants. The American Journal of Bioethics, 6(1), W1-W5.
• MacQueen, K. M., McLoughlin, K., Alleman, P., Burke, H. M., & Mack, N. (2008).
Partnering for care in HIV prevention trials. Journal of Empirical Research on Human
Research Ethics, 3(4), 5-18.
• MacQueen, K. M., Namey, E., Chilongozi, D. A., Mtweve, S. P., Mlingo, M., Morar, N., …
The HPTN 035 Standard of Care Assessment Team. (2007). Community perspectives
on care options for HIV prevention trial participants. AIDS Care, 19(4), 554-560.
• Merritt, M. & Grady, C. (2006). Reciprocity and post-trial access for participants in
antiretroviral therapy trials. AIDS, 20(14), 1791-1794.
• Millum, J. (2011). Post-trial access to antiretrovirals: Who owes what to whom? Bioethics,
25(3), 145-154.
• Philpott, S., Heise, L., McGrory, E., Paxton, L., Hankins, C., & The Participants in the
2009 GCM/CDC/UNAIDS Consultation on Standards of Prevention in HIV Prevention
Trials. (2011). The challenge of defining standards of prevention in HIV prevention
trials. Journal of Medical Ethics, 37(4), 244-248.
• Schroeder, D. & Gefenas, E. (2011). Realizing benefit sharing – The case of post-study
obligations. Bioethics, doi: 10.1111/j.1467-8519.2010.01857.x
• Shah, S. K., Dawson, L., Dixon, D. O., & Lie, R. K. (2011). Should sponsors and DSMBs
share interim results across trials? Journal of Acquired Immune Deficiency Syndromes,
58, 433-435.
• Singh, J. A. (2004). Standards of care in the antiretroviral rollout world. The Lancet, 364,
920-922.
• Stobie, M. & Slack, C. (2010). Treatment needs in HIV prevention trials: Using
beneficence to clarify sponsor-investigator responsibilities. Developing World Bioethics,
10(3), 150-157.
• Timmermans, S. & McKay,T. (2009). Clinical trials as treatment option: Bioethics and
health care disparities in substance dependency. Social Science & Medicine, 69,
1784-1790.
• Weijer, C. & LeBlanc, G. J. (2006). The balm of Gilead: Is the provision of treatment to
those who seroconvert in HIV prevention trials a matter of moral obligation or moral
negotiation? Journal of Law, Medicine, & Ethics, 34(4), 793-808.
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Scientific and Ethical Validity in HIV Clinical Trials
• Bauman, L. J., Sclafane, J. H., LoIacono, M., Wilson, K., & Macklin, R. (2008). Ethical
issues in HIV/STD prevention research with high risk youth: Providing help, preserving
validity. Ethics & Behavior, 18(2-3). 247-265.
• Berkley, S. (2003). Thorny issues in the ethics of AIDS vaccine trials. The Lancet, 362,
992.
• Binik, A., Weijer, C., McRae, A. D., Grimshaw, J. M., Boruch, R., Brehaut, J. C., …
Zwarenstein, M. (2011). Does clinical equipoise apply to cluster randomized trials in
health research? Trials, 12, 118-129.
• Borek, N., Allison, S., & Caceres, C. F. (2010). Involving vulnerable populations of youth in
HIV prevention clinical research. Journal of Acquired Immune Deficiency Syndromes,
54, S43-S49.
• Brooks, R. A., Newman, P. A., Duan, N., & Ortiz, D. J. (2007). HIV vaccine trial
preparedness among Spanish-speaking Latinos in the US. AIDS Care, 19(1), 52-58.
• Cherry, M. J. (2010). Non-consensual treatment is (nearly always) morally impermissible.
Journal of Law, Medicine & Ethics, 38, 789-798.
• Clark, J. J. & Walker, R. (2011). Research ethics in victimization studies: Widening the
lens. Violence Against Women, 17, 1489-1508.
• Crane, J. (2010). Adverse events and placebo effects: African scientists, HIV, and ethics
in the ‘global sciences.’ Social Studies of Science, 40(6), 843-870.
• DuVal, G. & Salmon, C. (2004). Research note: Ethics of drug treatment research with
court-supervised subjects. The Journal of Drug Issues, 34(4), 991-1005.
• Franrenet, S., Moutel, G., Raffi, F., Dabis, F., Bruyand, M., Herve, C., …Duchange, N.
(2011). Information that should be given to HIV cohort participants during ongoing
research: The viewpoints of patient representatives and research professionals. Journal
of Empirical Research on Human Research Ethics, 6(4), 76-83.
• Fuchs, J., Durham, M., McLellan-Lemal, E., Vittinghoff, E., Colfax, G., Gurwith, M., &
Buchbinder S. (2007). Negative social impacts among volunteers in an HIV vaccine
efficacy trial. Journal of Acquired Immune Deficiency Syndromes, I, 362-368.
• Hyder, A.A., & Dawson, L. (2005). Defining the standard of care in the developing world:
The intersection of international research ethics and health systems analysis.
Developing World Bioethics, 5, 142-152.
• Joint United Nations Programme on HIV/AIDS (UNAIDS) & World Health Organization
(WHO). (2007). Ethical considerations in biomedical HIV prevention trials: UNAIDS/WHO
guidance document. Geneva, CH: UNAIDS. Retrieved from
http://data.unaids.org/pub/Report/2007/jc1399-ethicalconsiderations_en.pdf
• Kimmelman, J. (2011). Ethics, ambiguity aversion, and the review of complex translational
clinical trials. Bioethics (in press, online advanced copy)
• Lagakos, S.W., Gable, A., & the Committee on the Methodological Challenges of HIV
Prevention Trials. (2008). Methodological Challenges in Biomedical and Prevention
Trials. Washington, DC: National Academies Press.
• Lairumbi, G. M., Michael, P., Fitzpatrick, R., & English, M. C. (2011). Ethics in practice:
The state of the debate on promoting the social value of global health research in
resource poor settings particularly Africa. BMC Medical Ethics, 12, doi:10.1186/1472-
6939-12-22
• Lazovski, J., Losso, M., Krohmal, B., Emanuel, E. Z., Grady, C., & Wendler, D. (2009).
Benefits and burdens of participation in a longitudinal clinical trial. Journal of Empirical
Research on Human Research Ethics, 4(3), 89-97.
• Levine, C. (2009). Ethics and epidemiology in the age of AIDS. In S. Coughlin, T. L.
Beauchamp, & D. L. Weed (eds.) Ethics and epidemiology (2nd ed; p 204-226). NY:
Oxford
• London, L., Kagee, A., Moodley, K. & Swartz, L. (2011). Ethics, human rights and HIV
vaccine trials in low-income settings. Journal of Medical Ethics,
doi:10.1136/medethics-2011-100227
• Macklin, R. (2011). Ethicalchallenges in HIV microbicide research: What protections do
women need? The International Journal of Feminist Approaches to Bioethics, 4,
124-143.
• Macklin, R. (2008). Standard of care: An evolution in ethical thinking. The Lancet, 372,
284-285.
• Malmqvist, E. (2011). (Mis) understanding exploitation. IRB: Ethics & Human Research,
33(2), 1-5.
• O’Grady, B. & Schuklenk, U. (2009). Rethinking mandatory HIV testing. Bioethics, 23(8), ii.
• Rhodes, T., Singer, M., Bourgois, P., Friedman, S. R., & Strathdee, S. A. (2005). The
social structural production of HIV risk among injecting drug users. Social Science &
Medicine, 61, 1026-1044.
• Richardson, H. S., & Belsky, L. (2004). The ancillary-care responsibilities of medical
researchers. An ethical framework for thinking about the clinical care that researchers
owe their subjects. Hastings Center Report, 34, 25-33.
• Schuklenk, U. & Ashcroft, R. (2007). HIV vaccine trials: Reconsidering the therapeutic
misconception and the question of what constitutes trial related injuries. Developing
World Bioethics, 7(3), ii-iv.
• Wyatt, G. E., Williams, J. K., Gupta, A., & Malebranche, D. (2011). Are cultural values and
beliefs included in U.S. based HIV interventions? Preventive Medicine,
doi:10.1016/j.ypmed.2011.08.021
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Multicultural Competence and Cultural Validity in
HIV Prevention Research Ethics
• Bischofberger, I. & Vischer, L. R. (2009). Interviewing sub-Saharan migrants in
Switzerland about HIV/AIDS: Critical refelections on the interview process. Journal of
Transcultural Nursing, 21(1), 23-28.
• Boltz, B., McGowan, K., Ramsey, K., & Lapidus, J. (2005). HIV perceptions and testing
history of American Indians residing in one Northwest Tribal Community. Poster
presentation.
• Brown, E. J. & Hill, M. A. (2005). Perceptions of HIV risks and prevention strategies by
rural and small city African Americans who use cocaine: Views from the inside. Issues
in Mental Health Nursing, 26, 359-377.
• Champagne, D. & Goldberg, C. E. (2005). Changing the subject: Individual versus
collective interests in Indian country research. Wicazo Sa Review, 20(1), 49-69.
• Colwell-Chanthaphonh, C. (2006). Self-governance, self-representation, self-determination
and the questions of research ethics commentary on “protecting the Navajo people
through tribal regulation of research. Science and Engineering Ethics, 12, 508-510.
• Grady, C., Wagman, J., Ssekubugu, R., Wawer, M. J., Serwadda, D., Kiddugav, M., …
Emanuael, E. J. (2008). Research benefits for hypothetical HIV vaccine trials: The
views of Ugandans in the Rakai district. IRB: Ethics & Human Research, 30(2), 1-7.
• Fisher, C. B., Hoagwood, K., Boyce, C., Duster, T., Frank, D. A., Grisso, T., … Zayas, L.
H. (2002). Research ethics for mental health science involving ethnic minority children
and youths. American Psychologist, 57(12), 1024-1037.
• Fisher, C. B., Oransky, M., Mahadevan, M., Singer, M., Mirhej, G., & Hodge, D. (2008).
Marginalized populations and drug addiction research: Realism, mistrust, and
misconception. IRB: Ethics & Human Research, 30, 1-9.
• Fisher, C. B., & Ragsdale, K. (2006). A goodness-of-fit ethics for multicultural research. In
J. Trimble and C. B. Fisher (Eds.), The handbook of ethical research with ethnocultural
populations and communities (pp. 3–26). Thousand Oaks, CA: Sage.
• Floyd, A. H. L. & Moyer, A. (2010). Effect of participant preferences in unblinded
randomized controlled trials. Journal of Empirical Research on Human Research Ethics,
5(2), 81-93.
• Fortune, T., Wright, E., Juzang, I., & Bull, S. (2010). Recruitment, enrollment and
retention of young black men for HIV prevention research: Experiences from the 411 for
Safe Text Project. Contemporary Clinical Trials, 31(2), 151-156.
• Fowers, B. J. & Davidov, B. J. (2006). The virtue of multiculturalism. American
Psychologist, 61(6), 581-594.
• Garber, M., Hanusa, B. H., Switzer, G. E., Mellors, J., & Arnold, R. M. (2007).
HIV-infected African Americans are willing to participate in HIV treatment trials. Journal
of General Internal Medicine, 22(1), 17-42.
• Loue, S. & Pike, E. C. (2010). Chapt. 14. Studies with minority populations, In Case
studies in ethics and HIV research (pp.245-260) NY: Springer
• McMahon, E., Moreton, R. J., & Luisi, B. N. (2010). Guarding against emerging
epidemics: Addressing HIV and AIDS among culturally and linguistically diverse
communities in NSW. NSW Public Health Bulletin, 21(3-4), 83-85.
• Ponterotto, J. G. (1998). Charting a course for research in multicultural counseling
training. The Counseling Psychologist, 26(1), 43-68.
• Ponterotto, J. G. (2010). Qualitative research in multicultural psychology: Philosophical
underpinnings, popular approaches, and ethical considerations. Cultural Diversity and
Ethnic Minority Psychology, 16(4), 581-589.
• Sahota, P.C. (2007). Research regulation in American Indian /Alaska Native communities:
Policy and practice considerations. National Congress of the American Indian Policy
Research Center.
• Sahota, P.C. (2007). Research Regulation in American Indian /Alaska Native
Communities: A guide to reviewing research studies. National Congress of the
American Indian Policy Research Center.
• Slomka, J., Ratliff, E. A., McCurdy, S. A., Timpson, S., & Williams, M. L. (2008).
Decisions to participate in research: Views of underserved minority drug users with or
at risk for HIV. AIDS Care, 20(10), 1224-1232.
• Slomka, J., Ratliff, E. A., McCurdy, S., Timpson, S., & Williams, M. L. (2008).
Perceptions of risk in research participation among underserved minority drug users.
Substance Use and Misuse, 43(11), 1640-1652
• Wechsberg, W. M. & Luseno, W. K. (2010). The need for culturally appropriate,
gender-specific global HIV prevention efforts with vulnerable women. Journal of
Prevention & Intervention in the Community, 38, 85-88.
• Zuniga, M. L., Blanco, E., Palinkas,L. A., Strathdee, S. A., Gifford, A. L. (2010).
Cross-cultural considerations in the recruitment of Latinos of Mexican origin into
HIV/AIDS clinical trials in the U.S.-Mexico border region: Clinical and patient
perspectives. Journal of Immigrant & Refugee Studies, 8, 241-260.
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Neurocognitive and Cultural Factors
Influencing Informed Consent HIV/AIDS Prevention Studies
• Aldridge, J. & Charles, V. (2008). Researching the intoxicated: Informed consent
implications for alcohol and drug research. Drug and Alcohol Dependence, 93,
191-196.
• Boga, M., Davies, A., Kamuya, D., Kinyanjui, S. M., Kivaya, E., Kombe, F., …
Mwalukore, S. (2011). Strengthening the informed consent process in international
health research through community engagement: The KEMRI-Wellcome Trust
research programme experience. PLoS Medicine, 8, doi:10.1371/journal.pmed.100108
• Bull, S., Farsides, B., & Ayele, F. T. (2012). Tailoring information provision and consent
processes to research contexts: The value of rapid assessments. Journal of Empirical
Research on Human Research Ethics, 7(1), 37-52.
• Carter, A. & Hall, W. (2008). Informed consent to opioid agonist maintenance treatment:
Recommended ethical guidelines. International Journal of Drug Policy, 19, 79-89.
• Chaisson, L. H., Kass, N. E., Chengeta, B., Methebula, U., & Samandari, T. (2011).
Repeated assessments of informed consent comprehension among HIV-infected
participants of a three-year clinical trial in Botswana. PLoS One, 6,
doi:10.1371/journal.pone.0022696
• Coletti, A. S., Heagerty, P., Sheon, A. R., Gross, M., Koblin, B. A., Metzger, D. S., &
Seage, G. R. (2002). Randomized, controlled evaluation of a prototype informed
consent process for HIV vaccine efficacy trials. Journal of Acquired Immune
Deficiency Syndromes, 32, 161-169.
• Corneli, A. L., Bentley, M. E., Sorenson, J. R., Henderson, G. E., van der Horst, C.,
Moses, A., … Jamieson, D. J. (2006). Using formative research to develop a
context-specific approach to informed consent for clinical trials. Journal of Empirical
Research on Human Research Ethics, 1(4), 45-60.
• Cortes, D. E., Drainoni, M., Henault, L. E., & Passche-Orlow, M. K. (2010). How to
achieve informed consent for research from Spanish-speaking individuals with low
literacy: A qualitative report. Journal of Health Communication, 15, 172-182.
Festinger, D. S., Ratanadilok, K., Marlowe, D. B., Dugosh, K. L., & Patapis, N. S.
(2007). Neuropsychological functioning and recall of research consent information
among drug court clients. Ethics & Behavior, 17(2), 163-186.
• Flory, J. & Emanuel, E. (2004). Interventions to improve research participants’
understanding in informed consent for research: A systematic review. Journal of the
American Medical Association, 292(13), 1593-1601.
• Gardner, W., Hoge, S. K., Bennett, N., Roth, L. H., Lidz, C. W., Monahan, J., & Mulvey,
E. P. (1993). Two scales for measuring patient’s perceptions for coercion during
mental hospital admission. Behavioral Sciences and the Law, 11, 307-321.
• Gray, R. H., Sewankambo, N. K., Wawer, M. J., Serwadda, D., Kiwanuka, N., & Lutalo,
T. (2006). Disclosure of HIV status on informed consent forms presents an ethical
dilemma for protection of human subjects. Journal of Acquired Immune Deficiency
Syndromes, 41, 246-248.
• Groves, A. K., Maman, S., Msomi, S., Makhanya, N., & Moodley, D. (2010). The
complexity of consent: Women’s experiences testing for HIV at an antenatal clinical in
Durban, South Africa. AIDS Care, 22(5), 538-544.
• Hall, W., Carter, L., & Morley, K. I. (2004). Neuroscience research on the addictions: A
prospectus for future ethical and policy analysis. Addictive Behaviors, 29, 1481-1495.
• Hickman, N. J., Prochaska, J.J., & Dunn, L. B. (2011). Screening for understanding of
research in the inpatient psychiatry setting. Journal of Empirical Research on Human
Research Ethics, 6(3), 65-72.
• Johnson-Green, D. & the NAN Policy & Planning Committee (2005). Informed consent in
clinical neuropsychology practice: Official statement of the National Academy of
Neuropsychology. Archives of Clinical Neuropsychology, 20, 335-340.
• Lindegger, G., Milford, C., Slack, C., Quayle, M., Xaba, X., & Vardas, E. (2006). Beyond
the checklist: Assessing understanding for HIV vaccine trial participation in South
Africa. Journal of Acquired Immune Deficiency Syndromes, 43, 560-566.
• Loue, S. & Pike, E. C. (2010). Chapt. 3 The informed consent process. InCase studies
in ethics and HIV research (pp 23-36). NY: Springer.
• Loue, S. & Pike, E. C. (2010). Chapt. 13 HIV-related research with cognitively impaired
persons. In Case studies in ethics and HIV research (pp. 221-244) NY: Springer
• Mandava, A., Pace, C., Campbell, B., Emanuel, E., & Grady, C. (2012). The quality of
informed consent: Mapping the landscape. A review of empirical data from developing
and developed countries. Journal of Medical Ethics, doi:10.1136/medethics-2011-
100178
• Marshall, P. (2006). Informed consent in international health research. Journal of
Empirical Research on Human Research Ethics, 1(1), 25-42.
• Mystakidou, K., Panagiotou, I., Katsaragakis, S., Tsilika, E., & Parpa, E. (2009). Ethical
and practical challenges in implementing informed consent in HIV/AIDS clinical trials
in developing or resource-limited countries. Journal of Social Aspects of HIV/AIDS,
6(2), 46-57.
• Roberts, L. W. (2002). Addiction and consent. The American Journal of Bioethics, 2(2),
58-60.
• Roberts, L. W., Geppert, C., McCarty, T., & Obenshain, S. S. (2003). Evaluating medical
students’ skills in obtaining informed consent for HIV testing. Journal of General
Internal Medicine, 18, 112-119.
• Saks, E. R., Dunn, L. B., & Palmer, B. W. (2006). Meta-consent in research on
decisional capacity: A “catch-22”? Schizophrenia Bulletin, 32(1), 42-46.
• Smith, W., Grady, C., Krohmal, B., Lazovski, J., & Wendler, D. (2011). Empirical
evaluation of the need for ‘on-going consent’ in clinical research. AIDS, 25, 107-114.
• Stunkel, L., Benson, M., McLellan, L., Sinaii, N., Bedarida, G., Emanuel, E., & Grady, C.
(2010). Comprehension and informedconsent: Assessing the effect of a short consent
form. IRB: Ethics & Human Research, 32(4), 1-9.
• Sugarman, J., Corneli, A., Donnell, D., Liu, T. Y., Rose, S., Celentano, D., …Metzger, D.
(2011). Are there adverse consequences of quizzing during informed consent for HIV
research. Journal of Medical Ethics, 37, 693-697.
• Vallely, A., Lees, S., Shagi, C., Kasindi, S., Soteli, S., Kavit, N., … Hayes, R. J. (2010).
How informed is consent in vulnerable populations? Experience using a continuous
consent process during the MDP301 vaginal microbicide trial in Mwanza, Tanzania.
BMC Medical Ethics, 11(10), doi: 10.1186/1472-6939-11-10.
• Woodsong, C., MacQueen, K., Namey, E., Sahay, S., Mlingo, M., Mehendale, S. (2006).
Women’s autonomy and informed consent in microbicide clinical trials. Journal of
Empirical Research on Human Research Ethics, 1(3), 11-26.
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Informed Consent and Assent for Research Involving
Children and Adolescents
• Adler, D. H. (2012). Inclusion of South African adolescents in HIV vaccine trials. Journal
of AIDS and HIV Research, 4(2), 30-35.
• Ashcroft, R., Goodenough, T., Williamson, E., & Kent, J. (2003). Children’s consent to
research participation: Social context and personal experience invalidate fixed cutoff
rules. The American Journal of Bioethics, 3(4), 16-18.
• Barfield, R. C. & Kane, J. R. (2008). Balancing disclosure of diagnosis and assent for
research in children with HIV. Journal of the American Medical Association, 300,
576-578.
• Borek, N., Allison, S., & Caceres, C. F. (2010). Involving vulnerable populations of youth
in HIV prevention clinical research. Journal of Acquired Immune Deficiency Syndromes,
54, S43-S49.
• Brody, J. L. & Waldron, H. B. (2000). Ethical issues in research on the treatment of
adolescent substance abuse disorders. Addictive Behaviors, 25(2), 217-228.
• Cameron, M. A., Marsillio, L. E., Cushman, L. F., & Morris, M. C. (2011). Parents’
perspectives on the consent approach for minimal-risk research involving children. IRB:
Ethics & Human Research, 33(6), 6-13.
• Clacherty, G. & Donald, D. (2007). Child participation in research: Reflections on ethical
challenges in the southern African context. African Journal of AIDS Research, 6(2),
147-156.
• De Bruyn, G., Skhosana, N., Robertson, G., McIntyre, J. A., & Gray, G. E. (2008).
Knowledge and attitudes towards HIV vaccines among Soweto adolescents. BMC
Research Notes, doi:10.1186/1756-0500-1-76
• Flicker, S. & Guta, A. (2008). Ethical approaches to adolescent participation in sexual
health research. Journal of Adolescent Health, 42, 3-10.
• Jackson, S. & Hafemeister, T. L. (2001). Impact of parental consent and notification
policies on the decisions of adolescents to be tested for HIV. Journal of Adolescent
Health, 29, 81-93.
• Jaspan, H. B., Cunningham, C. K., Tucker, T. P., Wright, P. F., Self, S. G., Sheets, R.
L., … The HIV Vaccine Adolescent Trials Working Group. (2008). Inclusion of
adolescents in preventive HIV vaccine trials: Public health policy and research design
at a crossroads. Journal of Acquired Immune Deficiency Syndromes, 47, 86-92.
• Kopelman, L. M. (2007). When can children with conditions be in no-benefit, higher-hazard
pediatric studies? The American Journal of Bioethics, 7(3), 15-16.
• Lakes, K. D., Vaughan, E., Jones, M., Burke, W., Baker, D., & Swanson, J. M. (2012).
Diverse perceptions of the informed consent process: Implications for the recruitment
and participation of diverse communities in the National Children’s Study. American
Journal of Community Psychology, 49, 215-232.
• Loue, S. & Pike, E. C. (2010). Chapt.12 HIV research with children. In Case studies in
ethics and HIV research (pp. 205-220) NY: Springer
• Minniear, T. D., Gilmore, B., Arnold, S. R., Flynn, P. M., Knapp, K. M., & Gaur, A. H.
(2009). Implementation of and barriers to routine HIV screening for adolescents.
Pediatrics, 124, 1076-1083.
• Mustanski, B. (2011). Ethical and regulatory issues with conducting sexuality research
with LGBT Adolescents: A call to action for a scientifically informed approach. Archives
of Sexual Behavior, 40(4), 673-686.
• Ott, M. A., Rosenberger, J. G., & Fortenberry, J. D. (2010). Parental permission and
perceived research benefits in adolescent STI research. Journal of Empirical Research
on Human Research Ethics, 5(2), 57-64.
• Rojas, N. L., Sherrit, L., Harris, S., & Knight, J. R. (2008). The role of parental consent in
adolescent substance use research. Journal of Adolescent Health, 42, 192-197.
• Rongkavilit, C., Naar-King, S., Chuenyam, T., Wang, B., Wright, K., & Phanuphak, P.
(2007). Health risk behaviors among HIV-infected youth in Bangkok, Thailand. Journal
of Adolescent Health, 40, 358e1-358e8.
• Sibley, A., Sheehan, M., & Pollard, A. J. (2012). Assent is not consent. Journal of
Medical Ethics, 38, 3.
• Strode, A. E. & Slack, C. M. (2011). Using the concept of ‘parental responsibilities and
rights’ to identify adults able to provide proxy consent to child research in South Africa.
South African Journal of Bioethics and Law, 4(2), 69-73.
• Swenson, R. R., Hadley, W. S., Houck, C. D., Fance, S. K., & Brown, L. K. (2011). Who
accepts a rapid HIV antibody test? The role of race/ethnicity and HIV risk behavior
among community adolescents. Journal of Adolescent Health, 48, 527-529.
• Vreeman, R. C., Nyandiko, W. M., & Meslin, E. M. (2009). Pediatric assent for a study of
antiretroviral therapy dosing for children in western Kenya: A case study in international
research collaboration. Journal of Empirical Research on Human Research Ethics, 4(1),
3-16.
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Ethical Considerations in HIV Prevention Research Recruitment
• Borek, N., Allison, S., & Caceres, C. (2010). Involving vulnerable populations of youth in
HIV prevention clinical research. Journal of Acquired Immune Deficiency Syndromes,
54, S43-S49.
• Calsyn, R. J., Klinkenberg, W. D., Morse, G. A., Miller, J., & Cruthis, R. (2004).
Recruitment, engagement, and retention of people living with HIV and co-occurring
mental health and substance use disorders. AIDS Care, 16(Supp. 1), S56-S70.
• Chaudoir, S. R., Fisher, J. D., & Simoni, J. M. (2011). A review and application of the
disclosure processes model. Social Science & Medicine, 72(10), 1618-1629.
• Colon, R. A., Deren, S., Guarino, H., Mino, M., & Kang, S. (2010). Challenges in recruiting
and training drug treatment patients as peer outreach workers: A perspective from the
field. Substance Use & Misuse, 45, 1892-1908.
• DeJong, J., Mahfoud, Z., Khoury, D., Barbir, F., & Afifi, R. A. (2009). Ethical
considerations in HIV/AIDS biobehavioral surveys that use respondent-driven sampling:
Illustrations from Lebanon. American Journal of Public Health, 99(9), 1562-1567.
• Fisher, C. B., Oranksy, M., Mahadevan, M., Singer, M., Mirhej, G., & Hodge, G. D.
(2009). Do drug abuse researchers have a duty to protect third parties from HIV
transmission? Moral perspectives of street drug users. In D. Buchanan, C. B. Fisher, &
L. Gable (Eds.), Research with high-risk populations: Balancing science, ethics, and
law (pp. 189-206). Washington, DC: APA Books.
• Gutierrez-Luna, A., Angeles-Llerenas, A., Wirtz, V, J., Alvarez Del Rio, A., Zamilpa-Majia,
L., Aranda-Flores, C., … Lazcano-Ponce, E. (2009). Strategies and ethical
considerations for the recruitment of young men who have sex with men: Challenges of
a vaccination trial in Mexico. Clinical Trials, 6, 365-372.
• Lau, C., Cardinali, M., Sato, P. A., Fix, A., & Flores, J. (2008). Broadening inclusion of
vulnerable populations in HIV vaccine trials. Expert Reviews Vaccines, 7(2), 259-268.
• Meyers, K., Metzger, D. S., Navaline, H., Woody, G. E., & McLellan, A. T. (1994). HIV
vaccine trials: Will intravenous drug users enroll? American Journal of Public Health,
84(5), 761-766.
• Newman, P. A., Duan, N., Rudy, E. T., & Anton, P. A. (2004). Challenges for HIV vaccine
dissemination and clinical trial recruitment: If we build it, will they come? AIDS Patient
Care and STDs, 18(12), 691-701.
• Newman, P. A., Duan, N., Roberts, K. J., Seiden, D., Rudy, E. T., Swendeman, D., &
Popova, S. (2006). HIV vaccine trial participation among ethnic minority communities:
Barriers, motivators, and implications for recruitment. Journal of Acquired Immune
Deficiency Syndromes, 41, 210-217.
• Oransky, M., Fisher, C. B., Mahadevan, M., & Singer, M. (2009). Barriers and
opportunities for recruitment for nonintervention studies on HIV risk: Perspectives of
street drug users. Substance Use & Misuse, 44, 1642-1659.
• Orellana, E. R., Picciano, J. F., Roffman, R. A., Swanson, F., & Kalichman, S. C. (2006).
Correlates of nonparticipation in an HIV prevention program for MSM. AIDS Education
and Prevention, 18(4), 348-361.
• Reed, J. L., Thistlethwaite, J. M., & Huppert, J. S. (2007). STI research: Recruiting an
unbiased sample. Journal of Adolescent Health, 41, 14-18.
• Scott, G. (2008). “They got their program, and I got mine”: A cautionary tale concerning
the ethical implications of using respondent-driven sampling to study injection drug
users. International Journal of Drug Policy, 19, 42-51.
• Stirley, C. L. W., Callahan, C., & Cottler, L. B. (2008). Enrolling, retaining, and benefiting
out-of-treatment drug users in intervention research. Journal of Empirical Research on
Human Research Ethics, 3(3), 19-25.
• Uuskula, A., Johnston, L. G., Raag, M., Trummal, A., Talu, A., & Des Jarlais, D. C.
(2010). Evaluating recruitment among female sex workers and injecting drug users at
risk for HIV using respondent-driven sampling in Estonia. Journal of Urban Health:
Bulletin of the New York Academy ofMedicine, 87(2), 304-317.
• Yin, L., Zhang, Y., Qian, H., Rui, B., Zhang, L., Zhu, J., … Shao, Y. (2008). Willingness
of Chinese injection drug users to participate in HIV vaccine trials. Vaccine, 26,
762-768.
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Ethical Issues in Compensation for HIV Prevention Research
• Bagley, S. J., Reynolds, W. W., & Nelson, R. M. (2007). Is a “wage-payment” model for
research participation appropriate for children? Pediatrics, 119, 46-51.
• Barnett, P. G., Sorensen, J. L., Wong, W., Haung, N., & Hall, S. M. (2009). Effect of
incentives for medication adherence on health care use and costs in methadone
patients with HIV. Drug and Alcohol Dependence, 100, 115-121.
• Emanuel, E. J., (2005). Undue inducement: Nonsense on stilts? American Journal of
Bioethics, 5, 9-13.
• Festinger, D. S., Marlowe, D. B., Dugosh, K. L., Croft, J. R., & Arabia, P. L. (2008).
Higher magnitude cash payments improve research follow-up rates without increasing
drug use or perceived coercion. Drug and Alcohol Dependence, 96, 128-135.
• Fry, C. & Dwyer, R. (2001). For love or money? An exploratory study of why injecting drug
users participate in research. Addiction, 96, 1319-1325.
• Klitzman, R., Albala, I., Siragusa, J., Nelson, K. N., & Appelbaum, P. S. (2007). The
reporting of monetary compensation in research articles. Journal of Empirical Research
on HumanResearch Ethics, 2(4), 61-67.
• Kwalgala, B., Wassenaar, D., & Ecuru, J. (2010). Payments and direct benefits in
HIV/AIDS related research projects in Uganda. Ethics & Behavior, 20(2), 95-109.
• Largent, E. A., Grady, C., Miller, F. G., & Wertheimer, A. (2012). Money, coercion, and
undue inducement: Attitudes about payments to research participants. IRB: Ethics &
Human Research, 34(1), 1-8.
• Lucke, J. C. & Hall, W. D. (2012). Under what conditions is it ethical to offer incentives to
encourage drug-using women to use long-acting forms of contraception? Addiction, doi:
10.1111/j.1360-0443.2011.03699.x
• Phillips, T. B. (2011). A living wage for research subjects. Journal of Law, Medicine &
Ethics, 39, 243-253.
• Phillips, T. B. (2011). Exploitation in payments to research subjects. Bioethics, 24,
209-219.
• Phillips, T. (2010). Protecting the subject: PDR and the potential for compromised
consent. The American Journal of Bioethics, 10(3), 14-15.
• Slomka, J., McCurdy, S., Ratliff, E. A., Timpson, S., & Williams, M. L. (2007).
Perceptions of financial payment for research participation among African-American
drug users in HIV studies. Journal of General Internal Medicine, 22, 1403-1409.
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Ethical Issues in HIV and Drug Use Research Involving New Technologies
• Battles, H. T. (2010). Exploring ethical and methodological issues in internet-based
research with adolescents. International Journal of Qualitative Methods, 9(1), 27-39.
• Bowen, A. (2005). Internet sexuality research with rural men who have sex with men: Can
we recruit and retain them? The Journal of Sex Research, 42(4), 317-323.
• Buchanan, E. A. & Ess, C. M. (2009). Internet research ethics and the institutional review
board: Current practices and issues. Computers and Society, 39, 43-49.
• Bull, S., Breslin, T. L., Wright, E. E., Black, S. R., Levine, D., & Santelli, J. S. (2010).
Case study: An ethics case study of HIV prevention research on facebook: The just/us
study. Journal of Pediatric Psychology, (in press, online advanced copy).
• Fernandez, M. I., Varga, L. M., Perrino, T., Collazo, J. B., Subiaul, F., Rehbein, A., …
Bowen, G. S. (2004). The internet as recruitment tool for HIV studies: Viable strategy
for reaching at-riskHispanic MSM in Miami? AIDS Care, 16(8), 953-963.
• Fitzgerald, T. D., Hunter, P. V., Hadjistavropoulos, T., Koocher, G. P. (2010). Ethical and
legal considerations for internet-based psychotherapy. Cognitive Behaviour Therapy,
39(3), 173-187.
• Fortune, T., Wright, E., Juzang, I., & Bull, S. (2010). Recruitment, enrollment and
retention of young black men for HIV prevention research: Experiences from the 411 for
Safe Text Project. Contemporary Clinical Trials, 31(2), 151-156.
• Fowler-Dixon, S. & Moreno, M. (2008). Internet research raises unique ethical concerns
for IRBs. IRB Advisor, 8, 25-28.
• Glickman, S. W., Galhenage, S., McNair, L., Barber, Z., Patel, K., Schulman, K. A., &
McHutchinson, J. G. (2012). The potential influence of internet-based social networking
on the conduct of clinical research studies. Journal of Empirical Research on Human
Research Ethics, 7(1), 71-80.
• Henry, J., Palmer, B. W., Palinkas, L., Gloriosos, D. K., Caligiuri, M. P., & Jeste, D. V.
(2009). Reformed consent: Adapting to new media and research participant
preferences. IRB: Ethics & Human Research, 31(2), 1-8.
• Khoshropour, C. M. & Sullivan, P. S. (2011). Risk of disclosure of participating in an
internet-based HIV behavioral risk study of men who have sex with men. Journal of
Medical Ethics, 37, 768-769.
• Loue, S. & Pike, E. C. (2010). Chapt.7 Recruiting for HIV research: Internet based
research. In Case studies in ethics and HIV research (pp 79-95). NY: Springer.
• Mack, N., Robinson, E. T., MacQueen, K. M., Moffett, J., & Johnson, L. M. (2010). The
exploitation of “exploitation” in the Tenofovir PrEP trial in Cameroon: Lessons learned
from media coverage of an HIV prevention trial. Journal of Empirical Research on
Human Research Ethics, 5(2), 3-19.
• Rosser, B. R. S., Gurak, L., Horvath, K. J., Oakes, J. M., Konstan, J., & Danilenki, G. P.
(2009). The challenges of ensuring participant consent in internet-based sex studies: A
case study of the Men’s INTernet Sex (MINTS-I and II) studies. Journal of
Computer-Mediated Communication, 14, 602-626.
• Shankar, G. & Simmons, A. (2009). Understanding ethics guidelines using an
internet-based expert system. Journal of Medical Ethics, 35, 65-68.
• Turow, J. & Hennessy, M. (2007). Internet privacy and institutional trust: Insights from a
national survey. New Media & Society, 9(2), 300-318.
• Tsu, R. C., Burm, M. L., Hilhooly, J. A., & Sells, C. W. (2002). Telephone vs. face-to-face
notification of HIV results in high-risk youth. Journal of Adolescent Health, 30, 154-160.
• Whitehead, E. (2007). “Just chatting” Research ethics and cyberspace. International
Journal of Qualitative Methods, 6(2), 1-9.
• Whitehead, L. C. (2007). Methodological and ethical issues in internet-mediated research
in the field of health: An integrated review of the literature. Social Science & Medicine,
65, 782-791.
• Youn, S. (2005). Teenagers’ perceptions of online privacy and coping behaviors: A
risk-benefit appraisal approach. Journal of Broadcasting & Electronic Media,49(1),
86-110.
• Youn, S. (2008). Gender and online privacy among teens: Risk perception, privacy
concerns, and protection behaviors. CyberPsychology & Behavior, 11(6), 763-765.
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Engaging Communities and Institutions in HIV Prevention Research
• Alvarez, R. A., Vasquez, E., Mayorga, C. C., Feaster, D. J., & Mitrani, V. B. (2006).
Increasing minority research participation through community organization outreach.
Western Journal of Nursing Research, 28(5), 541-560.
• Barsdorf, N., Maman, S., Kass, N., & Slack, C. (2010). Access to treatment in HIV
prevention trials: Perspectives from a South African community. Developing World
Bioethics, 10(2), 78-87.
• Boga, M., Davies, A., Kamuya, D., Kinyanjui, S. M., Kivaya, E., Kombe, F., …
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• Gleason-Comstock, J., Simpson, H. L., Streater, A., Rolack,R., Calhoun, C. B., &
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Privacy, Confidentiality and Disclosures in HIV Research,
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infected youth: The experience of the REACH study. Journal of Adolescent Health,
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• Ditmore, M. H. & Allman, D. (2011). ‘Who is Helsinki?’ Sex workers advise improving
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• Simmons, J. (2006). The interplay between interpersonal dynamics,treatment barriers,
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• Suhadev, M., Mahadevan, U., Dilip, M., Suryanarayanan, D., Sikhamani, R., & Thomas,
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Institutional Review Boards
and Human Participant Protections in HIV Research
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• Chin, L. J., Rifai-Bashjawish, H., Kleinert, K., Saltman, A., Leu, C., & Klitzman, R. (2011).
HIV/AIDS research conducted in the developing world and sponsored by the developed
world: Reporting of research ethics committee review in two countries. Journal of
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• Deeds, B. G., Castillo, M., Beason, Z., Cunningham, S. D., Ellen, J. M., Peralta, L., &
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• DuBois, J. M., O’Leary, C. C., & Cottler, L. B. (2009). The attitudes of females in drug
court toward additional safeguards in HIV prevention research. Prevention Science, 10,
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• DuBois, J. M., Volpe, R. L., & Rangel, E. K. (2008). Hidden empirical research ethics: A
review of three health journals from 2005 through 2006. Journal of Empirical Research
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• Eckenwiler, L. (2001). Moral reasoning and the review of research involving human
subjects. Kennedy Institute of Ethics Journal, 11(1), 37-69.
• Fowler-Dixon, S. & Moreno, M. (2008). Internet research raises unique ethical concerns
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• Flicker, S., Travers, R., Guta, A., McDonald, S., & Meagher, A. (2007). Ethical dilemmas
in community-based participatory research: Recommendations for institutional review
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• Guta, A., Nixon, S., Gahagan, J., & Fielden, S. (2012). “Walking along beside the
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trials among members of US Institutional Review Boards and South African research
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• Klitzman, R. L., Kleinert, K., Rifai-Bashjawish, H., & Leu, C. S. (2011). The reporting of
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• Kimmelman, J. (2011). Ethics, ambiguity aversion, and the review of complex
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• Loue, S. & Pike, E. C. (2010). Chapt. 4. Working with boards and committees: ECs, DSB,
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• Macklin, R. (2008). How independent are IRBs? IRB: Ethics & Human Research, 30(3),
15-19.
• Mamotte, N. & Wassenaar, D. (2009). Ethics review in a developing country: A survey of
South African social scientists’ experiences. Journal of Empirical Research on Human
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• Ross, L. F., Loup, A., Nelson, R. M., Botkin, J. R., Krost, R., Smith, G. R., & Gehlert, S.
(2010). Human subjects protections in community-engaged research: A research ethics
framework. Journal of Empirical Research on Human Research Ethics, 5(1), 5-17.
• Ross, L. F., Loup, A., Nelson, R. M., Botkin, J. R., Krost, R., Smith, G. R., & Gehlert, S.
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• Sengupta, S., Lo, B., Strauss, R. P., Eron, J., & Gifford, A. L. (2010). How researchers
define vulnerable populations in HIV/AIDS clinical trials. AIDS and Behavior, 14,
1313-1319.
• Shore, N., Drew, E., Brazauskas, R., & Seifer, S. D. (2011). Relationships between
community-based processes for research ethics review and institution-based IRBs: A
national study. Journal of Empirical Research on Human Research Ethics, 6(2), 13-21.
• Sirotin, N., Wolf, L. E., Pollack, L. M., Catania, J. A., Dolcini, M. M. & Lo, B. (2010). IRBs
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• Wisner, K. L., Conley, R. R., Taylor, S. F., Kosten, T., Rapaport, M. H., & Brown, L. S.
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Participant Perceptions of Risk
• Bell, K. & Salmon, A. (2011). What women who use drugs have to say about ethical
research: Findings of an exploratory qualitative study. Journal of Empirical Research on
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• Fisher, C. B. (2003). Adolescent and parent perspectives on ethical issues in youth drug
use and suicide survey research. Ethics & Behavior, 13(4), 303-332.
• Grady, C., Wagman, J., Ssekubugu, R., Wawer, M. J., Serwadda, D., Kiddugav, M., …
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• Nunn, A., Zaller, N., Cornwall, A., Mayer, K. H., Moore, E., Dickman, S., … Kwakwa, H.
(2011). Low perceived risk and high HIV prevalence among a predominantly African
American population participating in Philadelphia’s rapid HIV testing program. AIDS
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• Rasinski, K. A., Willis, G. B., Baldwin, A. K., Yeh, W., & Lee, L. (1999). Methods of data
collection, perceptions of risks and losses, and motivation to give truthful answers to
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• Suhadev, M., Nyamathi, A. M., Swaminathan, S., Venkatesan, P., Sakthivel, M. R.,
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ethical challenges for front line research workers
• Anspach, R. R, & Mizrachi, N. (2006). The field worker’s fields: Ethics, ethnography and
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• Farmer, P. & Campos, N. G. (2004). Rethinking medical ethics: A view from below.
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• Fisher, J. A. (2006). Co-ordinating ‘ethical’ clinical trials: The role of research coordinators
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• Forman, R. F., Bovasso, G., Woody, G., McNicholas, L., Clark, C., Royer-Malvestuto, C.,
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• Namakhoma, I., Bongololo, G., Bello, G., Nyirenda, L., Phoya, A., Phiri, S., …
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• Phillip, T. (2010). Protecting the subject: PDR and the potential for compromised consent.
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• Scott, C. K. & White, W. L. (2005). Ethical issues in the conduct of longitudinal studies of
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• Sengupta, S., Strauss, R. P., Miles, M. S., Roman-Isler, M., Banks, B., & Corbie-Smith,
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• Varas-Diaz, N., Negron, S. S., Neilands, T. B., Bou, F. C., & Rivera, S. M. (2010).
Stigmatization of illicit drug use among Puerto Rican health professionals in training.
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• Woodby, L. L., Williams, B. R., Wittich, A. R., & Burgio, K. L. (2011). Expanding the
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Participant perspectives on sensitive topics research
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• Black, M. C., Kresnow, M., Simon, T. R., Arias, I., & Shelley, G. (2006). Telephone
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• Campbell, R. & Adams, A. E. (2009). Why do rape survivors volunteer for face-to-face
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• Campbell, R., Adams, A. E., Wasco, S. M., Shrens, C. E., & Sefl, T. (2010). “What has it
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• Clark, C. J., Shahrouri, M., Halasa, L., Khalaf, I., Spencer, R., & Everson-Rose, S.
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methodological and individual difference factors in responses to research participation.
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• Ferrier-Auerbach, A. G., Erbes, C. R., & Polusny, M. A. (2009). Does trauma survey
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• Griffin, M. G., Resnick, P. A., Waldrop, A. E., & Mechanic, M. B. (2003). Participation in
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• Hoel, N., Shaikh, S., & Kagee, A. (2010). Muslim women’s reflections on the acceptability
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• Newman, E. & Kaloupek, D. (2004). The risks and benefits of participating in
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• Resick, P. A., Iverson, K. M., & Artz, C. E. (2009). Participant reactions to pretreatment
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• Schwerdtfeger, K. L. & Goff, B. S. N. (2008). The effects of trauma-focused research on
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• Shorey, R. C., Cornelius, T. L., & Bell, K. M. (2010). Reactions to participating in dating
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• Sikweyiya, Y. & Jewkes, R. (2012). Perceptions and experiences of research participants
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