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Articles

“Money Helps”: People who inject drugs and their perceptions of financial compensation and its ethical implications

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References

  • Abadie, R. (2010). The professional guinea pig: Big pharma and the risky world of human subjects. Durham, NC: Duke University Press.
  • Abadie, R., Welch-Lazoritz, M., Gelpi-Acosta, C., Reyes, J. C., & Dombrowski, K. (2016). Understanding differences in HIV/HCV prevalence according to differentiated risk behaviors in a sample of PWID in rural Puerto Rico. Harm Reduction Journal. doi:10.1186/s12954-016-0099-9
  • Abadie, R., Welch-Lazoritz, M., Khan, B., & Dombrowski, K. (2017). Social determinants of HIV/HCV co-infection: A case study from people who inject drugs in rural Puerto Rico. Addictive Behaviors Reports, 5, 29–32. doi:10.1016/j.abrep.2017.01.004
  • Abdul‐Quader, A. S., Heckathorn, D. D., McKnight, C., Bramson, H., Nemeth, C., Sabin, K., … Des Jarlais, D. C. (2006). Effectiveness of respondent-driven sampling for recruiting drug users in New York City: Findings from a pilot study. Journal of Urban Health, 83(3), 459–476. doi:10.1007/s11524-006-9052-7
  • Ackerman, T. F. (1989). An ethical framework for the practice of paying research subjects. IRB: A Review of Human Subjects Research, 11(4), 1–4. doi:10.2307/3564170
  • Barratt, M. J., Norman, J. S., & Fry, C. L. (2007). Positive and negative aspects of participation in illicit drug research: Implications for recruitment and ethical conduct. International Journal of Drug Policy, 18(3), 235–238. doi:10.1016/j.drugpo.2006.07.001
  • Bassett, I. V., Wilson, D., Taaffe, J., & Freedberg, K. A. (2015). Financial incentives to improve progression through the HIV treatment cascade. Current Opinion in HIV and AIDS. doi:10.1097/COH.0000000000000196
  • 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: an International Journal, 6, 84–98. doi:10.1525/jer.2011.6.4.84
  • Bentley, J. P., & Thacker, P. G. (2004). The influence of risk and monetary payment on the research participation decision making process. Journal of Medical Ethics, 30(3), 293–298. doi:10.1136/jme.2002.001594
  • 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. doi:10.1016/S0306-4603(99)00041-6
  • Brown, B., Galea, J. T., Davidson, P., & Khoshnood, K. (2016). Transparency of participant incentives in HIV research. The Lancet HIV. doi:10.1016/S2352-3018(16)30150-3
  • Centers for Disease Control and Prevention (CDC). (2010). Estimated lifetime risk for diagnosis of HIV infection among Hispanics/ Latinos,37 states and Puerto Rico, 2007. MMWR: Morbidity and Mortality Weekly Report, 59(40), 1297–1301.
  • Collins, A. B., Strike, C., Guta, A., Baltzer Turje, R., McDougall, P., Parashar, S., & McNeil, R. (2017). “We’re giving you something so we get something in return”: Perspectives on research participation and compensation among people living with HIV who use drugs. International Journal of Drug Policy, 39, 92–98. doi:10.1016/j.drugpo.2016.09.004
  • Czaicki, N. L., Mnyippembe, A., Blodgett, M., Njau, P., & McCoy, S. I. (2017). It helps me live, sends my children to school, and feeds me: A qualitative study of how food and cash incentives may improve adherence to treatment and care among adults living with HIV in Tanzania. AIDS Care: Psychological and Socio-Medical Aspects of AIDS/HIV, 29(7), 876–884. doi:10.1080/09540121.2017.1287340
  • Davidson, P., & Page, K. (2012). Research participation as work: Comparing the perspectives of researchers and economically marginalized populations. American Journal of Public Health. doi:10.2105/AJPH.2011.300418
  • de Walque, D., Gertler, P. J., Bautista-Arredondo, S., Kwan, A., Vermeersch, C., de Dieu Bizimana, J., … Condo, J. (2015). Using provider performance incentives to increase HIV testing and counseling services in Rwanda. Journal of Health Economics, 40, 1–9. doi:10.1016/j.jhealeco.2014.12.001
  • DeBeck, K., Shannon, K., Wood, E., Li, K., Montaner, J., & Kerr, T. (2007). Income generating activities of people who inject drugs. Drug and Alcohol Dependence, 91(1), 50–56. doi:10.1016/j.drugalcdep.2007.05.003
  • Devine, E. G., Knapp, C. M., Sarid-Segal, O., O’Keefe, S. M., Wardell, C., Baskett, M., … Ciraulo, D. A. (2015). Payment expectations for research participation among subjects who tell the truth, subjects who conceal information, and subjects who fabricate information. Contemporary Clinical Trials, 41, 55–61. doi:10.1016/j.cct.2014.12.004
  • Devine, E. G., Waters, M. E., Putnam, M., Surprise, C., O’Malley, K., Richambault, C., … Ciraulo, D. A. (2013). Concealment and fabrication by experienced research subjects. Clinical Trials, 10(6), 935–948. doi:10.1177/1740774513492917
  • Dickert, N., & Grady, C. (1999). What’s the price of a research subject? Approaches to payment for research participation. New England Journal of Medicine, 341(3), 198–203. doi:10.1056/NEJM199907153410312
  • Dickert, N. W. (2013). Concealment and fabrication: The hidden price of payment for research participation? Clinical Trials, 10(6), 840–841. doi:10.1177/1740774513506619
  • Doerrbecker, J., Behrendt, P., Mateu-Gelabert, P., Ciesek, S., Riebesehl, N., Wilhelm, C., … Steinmann, E. (2013). Transmission of hepatitis C virus among people who inject drugs: Viral stability and association with drug preparation equipment. Journal of Infectious Diseases, 207(2), 281–287. doi:10.1093/infdis/jis677
  • Festinger, D. S., Marlowe, D. B., Croft, J. R., Dugosh, K. L., Mastro, N. K., Lee, P. A., … Patapis, N. S. (2005). Do research payments precipitate drug use or coerce participation? Drug and Alcohol Dependence, 78(3), 275–281. doi:10.1016/j.drugalcdep.2004.11.011
  • Fisher, C. B. (2004). Ethics in drug abuse and related HIV risk research. Applied Developmental Science. doi:10.1207/s1532480xads0802_3
  • Fisher, C. B. (2011). Addiction research ethics and the Belmont principles: Do drug users have a different moral voice? Substance Use & Misuse, 46(6), 728–741. doi:10.3109/10826084.2010.528125
  • Fry, C. L., Hall, C., Ritter, W. A., & Jenkinson, R. (2006). The ethics of paying drug users who participate in research: A review and practical recommendations. Journal of Empirical Research on Human Research Ethics: an International Journal, 1(4), 21–36. doi:10.1007/s13398-014-0173-7.2
  • Gelinas, L., Largent, E. A., Cohen, G., Kornetsky, S., Bierer, B. E., & Fernandez Lynch, H. (2018). A framework for ethical payment to research participants. The New England Journal of Medicine, 362(5), 567–571.
  • Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York, NY: Aldine Pub. Co.
  • Grady, C. (2001). Money for research participation: Does iT jeopardize informed consent? The American Journal of Bioethics: AJOB, 1(2), 40–44. doi:10.1162/152651601300169031
  • Halpern, S. D., Karlawish, J. H. T., Casarett, D., Berlin, J. A., & Asch, D. A. (2004). Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials. Archives of Internal Medicine, 164(7), 801–803. doi:10.1001/archinte.164.7.801
  • Heckathorn, D. D., Semaan, S., Broadhead, R. S., & Hughes, J. J. (2002). Extensions of respondent-driven sampling: A new approach to the study of injection drug users aged 18–25. AIDS and Behavior, 6(1), 55–67. doi:10.1023/A:1014528612685
  • Johnston, L. G., Chen, Y.-H., Silva-Santisteban, A., & Raymond, H. F. (2013). An empirical examination of respondent driven sampling design effects among HIV Risk groups from studies conducted around the world. AIDS and Behavior, 17(6), 2202–2210. doi:10.1007/s10461-012-0394-8
  • Juritzen, T. I., Grimen, H., & Heggen, K. (2011). Protecting vulnerable research participants: A Foucault-inspired analysis of ethics committees. Nursing Ethics, 18(5), 640–650. doi:10.1177/0969733011403807
  • Kamuya, D. M., Marsh, V., Njuguna, P., Munywoki, P., Parker, M., & Molyneux, S. (2014). When they see us, it’s like they have seen the benefits!”: Experiences of study benefits negotiations in community-based studies on the Kenyan Coast. BMC Medical Ethics. doi:10.1186/1472-6939-15-90
  • Koester, S., Glanz, J., & Barón, A. (2005). Drug sharing among heroin networks: Implications for HIV and hepatitis B and C prevention. AIDS and Behavior, 9(1), 27–39. doi:10.1007/s10461-005-1679-y
  • Koocher, G. P. (1991). Questionable methods in alcoholism research. Journal of Consulting and Clinical Psychology, 59(2), 246–248. doi:10.1037/0022-006X.59.2.246
  • Lamkin, M., & Elliott, C. (2018). Avoiding Exploitation in Phase I Clinical Trials:More than (Un) Just Compensation. The Journal of Law, Medicine & Ethics, 46(1), 52–63. https://doi.org/10.1177/1073110518766008
  • Largent, E., & Fernandez Lynch, H. (2017). Paying research participants: The outsized influence of “undue influence.”. IRB: Ethics & Human Research, 39(4), 1–9.
  • Largent, E., Grady, C., Miller, F. G., & Wertheimer, A. (2013). Misconceptions about coercion and undue influence: Reflections on the views of IRB members. Bioethics, 27(9), 500–507. doi:10.1111/j.1467-8519.2012.01972.x
  • Macklin, R. (1981). On paying money to research subjects: “Due” and “undue” inducements. IRB: A Review of Human Subjects Research, 3(5), 1–6. doi:10.2307/3564136
  • McNeill, P. (1997). Paying people to participate in research: Why not? Bioethics, 11(5), 390–396. doi:10.1111/1467-8519.00079
  • 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 and Misuse, 44(11), 1642–1659. doi:10.3109/10826080802543671
  • Permuth-Wey, J., & Borenstein, A. R. (2009). Financial Remuneration for clinical and behavioral research participation: Ethical and practical considerations. Annals of Epidemiology, 19(4), 280–285. doi:10.1016/j.annepidem.2009.01.004
  • Reiser, S. J. (2005). Research compensation and the monetarization of medicine. Journal of the American Medical Association. doi:10.1001/jama.293.5.613
  • Reyes, J. C., Colón, H. M., Robles, R. R., Rios, E., Matos, T. D., Negrón, J., … Shepard, E. (2006). Prevalence and correlates of hepatitis C Virus infection among street-recruited injection drug users in San Juan, Puerto Rico. Journal of Urban Health, 83(6), 1105–1113. doi:10.1007/s11524-006-9109-7
  • Ritter, A. J., Fry, C. L., & Swan, A. (2003). The ethics of reimbursing injecting drug users for public health research interviews: What price are we prepared to pay? International Journal of Drug Policy, 14(1), 1–3. doi:10.1016/S0955-3959(02)00094-4
  • Scott, J. (1985). Weapons of the weak: Everyday forms of peasant resistance. New Haven, CT: Yale University Press. doi:10.2307/2070255
  • 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(10), 1403–1409. doi:10.1007/s11606-007-0319-9
  • Topp, L., Day, C. A., Wand, H., Deacon, R. M., van Beek, I., Haber, P. S., … Maher, L. (2013). A randomised controlled trial of financial incentives to increase hepatitis B vaccination completion among people who inject drugs in Australia. Preventive Medicine, 57(4), 297–303. doi:10.1016/j.ypmed.2013.04.013
  • Van Handel, M. M., Rose, C. E., Hallisey, E. J., Kolling, J. L., Zibbell, J. E., Lewis, B., … Brooks, J. T. (2016). County-level vulnerability assessment for rapid dissemination of HIV or HCV infections among persons who inject drugs, United States. JAIDS: Journal of Acquired Immune Deficiency Syndromes, 73(3), 323–331. doi:10.1097/QAI.0000000000001098
  • Wong, J. C., & Bernstein, M. (2011). Payment of research subjects for more than minimal risk trials is unethical. American Journal of the Medical Sciences, 342, 294–296. doi:10.1097/MAJ.0b013e318227e0a1

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