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Journal of General Internal Medicine

, Volume 22, Issue 10, pp 1403–1409 | Cite as

Perceptions of Financial Payment for Research Participation among African-American Drug Users in HIV Studies

  • Jacquelyn SlomkaEmail author
  • Sheryl McCurdy
  • Eric A. Ratliff
  • Sandra Timpson
  • Mark L. Williams
Original COntributions
First Online:

Abstract

BACKGROUND

Financial compensation for participating in research is controversial, especially when participants are recruited from economically disadvantaged and/or marginalized populations such as drug users. Little is known about these participants’ own views regarding payment for research participation.

OBJECTIVE

The objective of the study was to elicit underserved minority drug users’ views about monetary payments for participating in research.

DESIGN

Semi-structured in-depth interview study of motivations for and perceptions of participation in research was used.

PARTICIPANTS

Thirty-seven adult, economically disadvantaged African-American crack cocaine smokers were the participants of the study.

APPROACH

Participants were recruited from among those taking part in three HIV prevention studies. Interviews were conducted at one of 2 research field offices located in underserved minority neighborhoods in Houston, Texas. Interviews lasting 30–45 min were recorded, transcribed, coded, and analyzed for categories and themes using both conventional and directed qualitative content analysis. This report addresses themes under the broad category of financial motivations for participating in research.

RESULTS

Participants viewed monetary payment for research as essential to attract participation and desirable to provide optional income. Payment for research participation was perceived as one potential income source among others. Participants considered self-determination a prerogative for themselves and others. They rejected the notion of payment for participation as encouraging drug use or as inducing risk taking.

CONCLUSIONS

Research regulators should consider participants’ views of their desires and capacity for autonomous decisions about financial compensation for research rather than assume participants’ diminished capacity due to poverty and/or drug use. Payment for research participation appears to be part of the “informal economy” that has been observed in underserved communities.

KEY WORDS

undue inducement drug use HIV/AIDS underserved minorities ethics of payment for research 
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Notes

Acknowledgments

Partial support was provided by the National Institute on Drug Abuse. We are grateful to the staff at the Montrose field site for their assistance in facilitating our interviews. We thank our participants for sharing their views with us.

Authors’ Conflicts of Interest

None.

References

  1. 1.
    Macklin R. Due and undue inducements: on paying money to research subjects. IRB: A Review of Human Subjects Research. 1981;3:1–6.Google Scholar
  2. 2.
    Newton L. Inducement, due and otherwise. IRB: A Review of Human Subjects Research. 1982;4:4–6.Google Scholar
  3. 3.
    Wilkinson M, Moore A. Inducement in research. Bioethics. 1997;11:373–89.PubMedCrossRefGoogle Scholar
  4. 4.
    McNeill P. A response to Wilkinson and Moore. Paying people to participate in research: why not? Bioethics. 1997;11:390–6.PubMedCrossRefGoogle Scholar
  5. 5.
    Lemmens T, Elliott C. Guinea pigs on the payroll: the ethics of paying research subjects. Account Res. 1999;7:3–20.PubMedCrossRefGoogle Scholar
  6. 6.
    Tishler CL, Bartholomae S. The recruitment of normal healthy volunteers: A review of the literature on the use of financial incentives. J Clin Pharmacol. 2002;42:365–75.PubMedCrossRefGoogle Scholar
  7. 7.
    Grant RW, Sugarman J. Ethics in human subjects research: do incentives matter? J Med Philos. 2004;29:717–38.PubMedCrossRefGoogle Scholar
  8. 8.
    Dunn LB, Gordon NE. Improving informed consent and enhancing recruitment for research by understanding economic behavior. JAMA. 2005;293:609–12.PubMedCrossRefGoogle Scholar
  9. 9.
    Reiser SJ. Research compensation and the monetarization of medicine. JAMA. 2005;293:613–4.PubMedCrossRefGoogle Scholar
  10. 10.
    Emanuel EJ. Undue inducement: nonsense on stilts? Am J Bioethics. 2005;5:9–13.CrossRefGoogle Scholar
  11. 11.
    Grady C. Payment of clinical research subjects. J Clin Invest. 2005;115:1681–7.PubMedCrossRefGoogle Scholar
  12. 12.
    Dickert N, Emanuel E, Grady C. Paying research subjects: an analysis of current policies. Ann Intern Med. 2002;136:368–73.PubMedGoogle Scholar
  13. 13.
    Beauchamp TL, Jennings B, Kinney ED, Levine RJ. Pharmaceutical research involving the homeless. J Med Philos. 2002;27:547–64.PubMedCrossRefGoogle Scholar
  14. 14.
    Pace C, Miller FG, Danis M. Enrolling the uninsured in clinical trials: an ethical perspective. Crit Care Med (Suppl.). 2003;31:S121–5.CrossRefGoogle Scholar
  15. 15.
    Emanuel EJ. Ending concerns about undue inducement. J Law Med Ethics. 2004;32:100–5.PubMedCrossRefGoogle Scholar
  16. 16.
    Dickert N, Grady C. What’s the price of a research subject? Approaches to payment for research participation. N Engl J Med. 1999;341:198–203.PubMedCrossRefGoogle Scholar
  17. 17.
    Hughes JJ. Paying injection drug users to educate and recruit their peers: why participant-driven interventions are an ethical public health model. Qual Manag Health Care. 1999;7:4–12.PubMedGoogle Scholar
  18. 18.
    Buchanan D, Khoshnood K, Stopka T, Shaw S, Santelices C, Singer M. Ethical dilemmas created by the criminalization of status behaviors: Case examples from ethnographic field research with injection drug users. Health Educ Behav. 2002;29:30–42.PubMedCrossRefGoogle Scholar
  19. 19.
    Festinger DS, Marlowe DB, Croft JR, et al. Do research payments precipitate drug use or coerce participation? Drug Alcohol Depend. 2005;78:275–81.PubMedCrossRefGoogle Scholar
  20. 20.
    Williams ML, Timpson S, Klovdal A, Bowen AM, Ross, MW, Keel B. HIV risk among a sample of drug using male sex workers. AIDS. 2003;17:1402–4.PubMedCrossRefGoogle Scholar
  21. 21.
    Halpern SD, Karlawish JHT, Casarett D, Berlin JA, Asch DA. Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials. Arch Intern Med. 2004;164:801–3.PubMedCrossRefGoogle Scholar
  22. 22.
    Bentley JP, Thacker PG. The influence of risk and monetary payment on the research participation decision making process. J Med Ethics. 2004;30:293–8.PubMedCrossRefGoogle Scholar
  23. 23.
    Russell ML, Morelejo DG, Burgess ED. Paying research subjects: participants’ perspectives. J Med Ethics. 2000;26:126–30.PubMedCrossRefGoogle Scholar
  24. 24.
    Casarett D, Karlawish J, Asch DA. Paying hypertension research subjects. Fair compensation or undue inducement? J Gen Intern Med. 2002;17:651–3.CrossRefGoogle Scholar
  25. 25.
    Casarett D, Karlawish J, Sankar P, Hirschman KB, Asch DA. Obtaining informed consent for clinical pain research: patients’ concerns and information needs. Pain. 2001;92:71–9.PubMedCrossRefGoogle Scholar
  26. 26.
    Vosvick M, Gore-Felton C, Ashton E, et al. Sleep disturbances among HIV-positive adults: The role of pain, stress, and social support. J Psychosom Res. 2004;57:459–63.PubMedGoogle Scholar
  27. 27.
    Coletti AS, Heagerty P, Sheon AR, et al. Randomized, controlled evaluation of a prototype informed consent process for HIV vaccine efficacy trials. J Acquir Immune Defic Syndr: JAIDS. 2003;32:161–9.PubMedGoogle Scholar
  28. 28.
    Patton MQ. Qualitative Evaluation and Research Methods 2nd ed. Newbury Park, California: Sage Publications; 1990.Google Scholar
  29. 29.
    Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–88.PubMedCrossRefGoogle Scholar
  30. 30.
    Sandelowski M. The problem of rigor in qualitative research. Adv Nurs Sci. 1986;8:27–37.Google Scholar
  31. 31.
    Becker HS. Problems of inference and proof in participant observation. Am Sociol Rev. 1958;23:652–60.CrossRefGoogle Scholar
  32. 32.
    Creswell JW, Miller DL. Determining validity in qualitative inquiry. Theory Pract. 2000;39:124–30.Google Scholar
  33. 33.
    Barbour RS. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ. 2001;322:1115–7.PubMedCrossRefGoogle Scholar
  34. 34.
    Wright S, Klee H, Reid P. Interviewing illicit drug users: observations from the field. Addict Res. 1998;6:517–35.Google Scholar
  35. 35.
    Agre P, Rapkin B, Dougherty J, Wilson R. Barriers encountered conducting informed consent research. IRB: Ethics and Human Research. 2002;24:1–5.PubMedCrossRefGoogle Scholar
  36. 36.
    Sachs GA, Hougham GW, Sugarman J, et al. Conducting empirical research on informed consent: challenges and questions. IRB: Ethics and Human Research Supplement. 2003;25:S4–10.Google Scholar
  37. 37.
    Narotzky S. New Directions in Economic Anthropology. London: Pluto Press; 1997.Google Scholar
  38. 38.
    Anderson E. Code of the Street. New York: W.W Norton & Company, Inc.; 1999.Google Scholar
  39. 39.
    Bourgois P. In search of Horatio Alger. Culture and ideology in the crack economy. In: Reinarman C, Levine HG, eds. Crack in America: Demon Drugs and Social Justice. Berkeley, CA: University of California Press; 1997;57–76.Google Scholar

Copyright information

© Society of General Internal Medicine 2007

Authors and Affiliations

  • Jacquelyn Slomka
    • 1
    Email author
  • Sheryl McCurdy
    • 1
  • Eric A. Ratliff
    • 1
  • Sandra Timpson
    • 1
  • Mark L. Williams
    • 1
  1. 1.Division of Health Promotion and Behavioral Sciences, School of Public HealthUniversity of Texas Health Science Center at HoustonHoustonUSA

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