The Ethics of Paying Drug Users Who Participate in Research: A Review and Practical Recommendations

Abstract

The payment of research participants raises ethical and empirical questions that have special importance in addictions research involving drug-dependent participants. Despite a now large literature on human subjects payment, what is still needed is practical guidance for investigators and ethics committees. This paper reviews the literature on: Current payment practices and guidelines; defining features of undue and due incentives and fair reimbursement; and the significance of risks and harms that may arise from paying drug using participants. We conclude that research payments are ethically acceptable in most circumstances of addictions research, but should be closely scrutinized in situations where these may exacerbate existing harms or create additional risks for participants and investigators. General principles, key questions and procedural options are highlighted for an applied approach to ethical research payments. Future research directions are identified.

Keywords

ethics payment reimbursement research subject drug addiction

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References

Abdul-Quader

A.S.

Heckathorn

D.D.

McKnight

Bramson

Nemeth

Sabin

Gallagher

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), 459–76.

Ackerman

T.F.

(1989). An ethical framework for the practice of paying research subjects. IRB: A Review of Human Subjects Research, 11, 1–4.

Adlam

(2006). Ecstasy users paid. Northern Territory News, 11 May.

Ashcroft

(2001). Selection of human research subjects. In: Chadwick

ed. The Concise Encyclopedia of the Ethics of New Technologies. (pp. 255–66). New York: Academic Press.

Barratt

M.J.

Norman

J.S.

Fry

C.L.

(Available online 5 September 2006). Positive and negative aspects of participation in illicit drug research: Implications for recruitment and ethical conduct. International Journal of Drug Policy. doi:10.1016/j.drugpo.2006.07.001.

Beauchamp

T.L.

, & Childress

J.F.

(2001). Principles of Biomedical Ethics, 5th ed. Oxford University Press, Oxford.

Bentley

, & Thacker

(2004). The influence of risk and monetary payment on the research participation decision making process. Journal of Medical Ethics, 30, 293–298.

Borzekowski

D.L.

Rickert

V.I.

Ipp

, & Fortenberry

J.D.

(2003). At what price? The current state of subject payment in adolescent research. Journal of Adolescent Health, 33(5), 378–384.

Brody

(1998). The Ethics of Biomedical Research: An International Perspective. Oxford University Press, New York.

10.

Brody

J.L.

, & Waldron

H.B.

(2000). Ethical issues in research on the treatment of adolescent substance abuse disorders. Addictive Behaviors, 25, 217–28.

11.

Canadian Press (1985). Human guinea pigs paid for their role in drug firm's tests. The Globe and Mail, 24 May, 8.

12.

Charland

(2002). Cynthia's Dilemma: Consenting to Heroin Prescription. American Journal of Bioethics, 2(2), 37–47.

13.

Church

(1993). Estimating the effect of incentives on mail survey response rates: A meta-analysis. Public Opinion Quarterly, 5, 62–79.

14.

Cohen

P.J.

(2002). Untreated addiction imposes an ethical bar to recruiting addicts for non-therapeutic studies of addictive drugs. Journal of Law, Medicine and Ethics, 30, 73–81.

15.

College on Problems of Drug Dependence. (1995). Human subject issues in drug abuse research. Drug and Alcohol Dependence, 37, 167–75.

16.

Council for International Organizations of Medical Sciences (1991). International Guidelines for Ethical Review of Epidemiological Studies. Geneva: Council for International Organizations of Medical Sciences, World Health Organization.

17.

Council for International Organizations of Medical Sciences (2002). International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: Council for International Organizations of Medical Sciences, World Health Organization. http://www.cioms.ch/guidelines_nov_2002_blurb.htm (Accessed 17/10/2006).

18.

Dickert

Emanuel

Grady

(2002). Paying research subjects: An analysis of current policies. Annals of Internal Medicine, 136, 368–73.

19.

Dickert

, & Grady

(1999). What's the price of a research subject? Approaches to payment for research participation. New England Journal of Medicine, 341, 198–203.

20.

Dunn

, & Gordon

(2005). Improving informed consent and enhancing recruitment for research by understanding economic behavior. Journal of the American Medical Association, 293, 609–612.

21.

Dyer

(2005). Druggies paid to talk. Northern Territory News, 10 May, 4.

22.

Economic and Social Research Council (2005). Research Ethics Framework. Swindon: ESRC. http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Images/ESRC_Re_Ethics_Frame_tcm6-11291.pdf (Accessed 17/10/2006).

23.

Elliott

(2004). Bangkok 2004. Drug control, human rights, and harm reduction in the age of AIDS. HIV AIDS Policy & Law Review, 9(3), 86–90.

24.

Farre

Lamas

, & Cami

(1995). Sensation seeking amongst healthy volunteers participating in phase I clinical trials. British Journal of Clinical Pharmacology, 39, 405–409.

25.

Festinger

D.S.

Marlowe

D.B.

Croft

J.R.

Dugosh

K.L.

Mastro

N.K.

Lee

P.A.

Dematteo

D.S.

Patapis

N.S.

(2005). Do research payments precipitate drug use or coerce participation? Drug and Alcohol Dependence, 78(3), 275–81.

26.

Fisher

C.B.

(2004). Ethics in Dug Abuse and Related HIV Risk Research. Applied Developmental Science, 8(2), 91–103.

27.

Foddy

, & Savulescu

(2006). Autonomy, addiction and the drive to pleasure: Designing drugs and our biology: A reply to Neil Levy. Bioethics, 20(1), 21–23.

28.

Fry

, & Dwyer

(2001). For love or money? An exploratory study of why injecting drug users participate in research. Addiction, 96, 1319–25.

29.

Fry

, & Hall

(2002). An ethical framework for drug epidemiology? Identifying the issues. Bulletin on Narcotics, 54, 21–32. http://undcp.org/bulletin_on_narcotics.html.

30.

Fry

C.L.

(2003). Safer injecting facilities in Vancouver: Considering issues beyond potential use. Canadian Medical Association Journal, 169(8), 777–778.

31.

Fry

C.L.

, & Hall

(2004). Ethical challenges in drug epidemiology: Issues, principles and guidelines. Global Assessment Programme on Drug Abuse Epidemiological Toolkit, Module VII. Global Assessment Programme on Drug Abuse. Vienna: United Nations Office on Drugs and Crime. http://www.unodc.org/pdf/gap_toolkit_module7.pdf.

32.

Fry

C.L.

Ritter

Baldwin

Bowen

Gardiner

Holt

Jenkinson

R.A.

Johnston

(2005). Paying research subjects: A study of current practices in Australia. Journal of Medical Ethics, 31, 542–547.

33.

Gorelick

Pickens

R.W.

, & Benkovsky

F.O.

(1999). Clinical research in substance abuse: Human subjects issues. In: Pincus

Lieberman

Ferris

, eds. Ethics in psychiatric research: A resource manual for human subjects protection. Washington American Psychiatric Association.

34.

Grady

(2001) Money for research participation: Does it jeopardize informed consent? American Journal of Bioethics, 1, 41–44.

35.

Grady

(2005). Payment of clinical research subjects. Journal of Clinical Investigation, 115(7), 1681–1687.

36.

Grady

Dickert

Jawetz

Gensler

, & Emanuel

(2005). An analysis of U.S. practices of paying research participants. Contemporary Clinical Trials, 26, 365–375.

37.

Grant

, & Sugarman

(2004). Ethics in human subjects research: Do incentives matter? Journal of Medicine & Philosophy, 29, 717–738.

38.

Hall

(1990). Prisoners paid £300 for heart drug trial. The Independent—London, 4 October, 2.

39.

Hall

(2006). Avoiding potential misuses of addiction brain science. Addiction, 101, 1529–1532.

40.

Halpern

Karlawish

Casarett

Berlin

, & Asch

(2004). Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials. Archives of Internal Medicine, 164, 801–803.

41.

Harrison

D.A.

(1995). Volunteer motivation and attendance decisions: Competitive theory testing in multiple samples from a homeless shelter. Journal of Applied Psychology, 80, 371–85.

42.

Health Research Council of New Zealand. (2005). Guidelines on Ethics in Health Research. May 2002, Revised 2005. Auckland: Health Research Council. http://www.hrc.govt.nz/assets/pdfs/publications/Ethics%20Guidelines%20July%202006.pdf (Accessed 17/10/2006).

43.

Heckathorn

D.D.

(1997). Respondent-driven sampling: A new approach to the study of hidden populations. Social Problems, 44, 174–199.

44.

Higgs

Moore

, & Aitken

(2006). Engagement, reciprocity and advocacy: Ethical harm reduction practice in research with injecting drug users. Drug and Alcohol Review, 25, 419–423.

45.

Iltis

A.S.

DeVader

, & Matsuo

(2006). Payments to children and adolescents enrolled in research: A pilot study. Pediatrics, 118(4), 1546–1552.

46.

Kasprzyk

Montano

D.E.

St Lawrence

J.S.

, & Phillips

W.R.

(2001). The effects of variations in mode of delivery and monetary incentive on physicians' responses to a mailed survey assessing STD practice patterns. Evaluation & The Health Professions, 24, 3–17.

47.

Kirby

K.C.

Marlowe

D.B.

Festinger

D.S.

Lamb

R.J.

, & Platt

J.J.

(1998). Schedule of voucher delivery influences initiation of cocaine abstinence. Journal of Consulting and Clinical Psychology, 66, 761–767.

48.

Koocher

G.P.

(1991). Questionable methods in alcoholism research. Journal of Consulting and Clinical Psychology, 59, 246–248.

49.

Latterman

, & Merz

J.F.

(2001). How much are subjects paid to participate in research? American Journal of Bioethics, 1, 45–46.

50.

Lemmens

, & Elliot

(1999). Guinea pigs on the payroll: The ethics of paying research subjects. Accountability in Research, 7, 3–20.

51.

Macklin

(1981). “Due” and “undue” inducements: On paying money to research subjects. IRB: A Review of Human Subjects Research, 3, 1–6.

52.

Macklin

(1989). The paradoxical case of payment as benefit to research subjects. IRB: A Review of Human Subjects Research, 11, 1–3.

53.

Magnani

Sabin

Saidel

Heckathorn

(2005). Review of sampling hard-to-reach and hidden populations for HIV surveillance. AIDS, 19 (Suppl 2), S67–72.

54.

McCrady

B.S.

, & Bux

D.A.

(1999). Ethical issues in informed consent with substance abusers. Journal of Consulting and Clinical Psychology, 67, 186–193.

55.

McDougall

(2001). Plan to pay drug addicts for methadone study condemned as ‘unethical’. Scotland on Sunday, 29 July, 3.

56.

McKay

J.R.

Luborsky

Barber

J.P.

Kabasakalian-McKay

Zorrilla

E.P.

, & Cacciola

J.S.

(1997). Affiliative trust–mistrust and immunity in depressed patients receiving supportive-expressive psychotherapy. Psychotherapy Research, 7, 249–260.

57.

McKeganey

(2001). To pay or not to pay: Respondents' motivation for participating in research. Addiction, 96, 1237–38.

58.

McNeill

(1997). Paying people to participate in research: Why not? [A response to Wilkinson and Moore]. Bioethics, 11, 390–96.

59.

Miller

P.G.

Johnston

McElwee

P.R.

, & Noble

(In press—Accepted 26 September 2006). A pilot study using the internet to study patterns of party drug use: Processes, findings and limitations. Drug and Alcohol Review.

60.

National Health and Medical Research Council (1999). National statement of ethical conduct in research involving humans. Canberra: Commonwealth of Australia. http://www.nhmrc.gov.au/publications/synopses/e35syn.htm (Accessed 17/10/2006).

61.

National Health and Medical Research Council (2002). Human research ethics handbook. Commentary on the national statement on ethical conduct in research involving humans. Canberra: Commonwealth of Australia. http://www.nhmrc.gov.au/publications/hrecbook/misc/contents.htm (Accessed 17/10/2006).

62.

National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Washington, DC: U.S Government Printing Office. http://ohsr.od.nih.gov/guidelines/belmont.html (Accessed 17/10/2006).

63.

Nuffield Council on Bioethics (2005). The ethics of heathcare related research in developing countries: A follow-up Discussion Paper. London, UK: Nuffield Council on Bioethics http://www.nuffieldbioethics.org/go/ourwork/developingcountries/publication_169.html (Accessed 17/10/2006).

64.

Office for Protection from Research Risks (1993). IRB guidebook. Washington, DC: USA. http://www.hhs.gov/ohrp/irb/irb_guidebook.htm (Accessed 18/10/2006).

65.

Ritter

A.J.

Fry

C.L.

, & Swan

(2003). The ethics of reimbursing drug users for public health research interviews: What price are we prepared to pay? International Journal of Drug Policy, 14, 1–3.

66.

Rudy

E.B.

Estok

P.J.

Kerr

M.E.

, & Menzel

(1994). Research incentives: Money versus gifts. Nursing Research, 43, 253–55.

67.

Salganik

M.J.

, & Heckathorn

D.D.

(2004). Sampling and estimation in hidden populations using respondent-driven sampling. Sociological Methodology, 34, 193–239.

68.

Sanci

Sawyer

Weller

P.J.

Bond

L.M.

Patton

G.C.

(2004). Youth health research ethics: Time for a mature minor clause? Medical Journal of Australia, 180, 336–338.

69.

Savulescu

(2001). Taking the plunge. New Scientist, 169, 50.

70.

Seddon

(2005). Paying drug users to take part in research: Justice, human rights and business perspectives on the use of incentive payments. Addiction Research and Theory, 13(2), 101–109.

71.

Sieber

J.E.

, & Sorensen

J.L.

(1992). Conducting social and behavioral AIDS research in drug treatment clinics. IRB: A review of Human Subjects Research, 14, 1–5.

72.

Singer

van-Hoewyk

, & Maher

M.P.

(1998). Does payment of incentives create expectation effects? Public Opinion Quarterly, 62, 152–64.

73.

Smith

King

Hindley

Barnetson

Barton

, & Kim

(1998). The experience of research participation and the value of diagnosis in dementia: Implications for practice. Journal of Mental Health, 7, 309–321.

74.

South African Medical Research Council. (2002). MRC Guidelines on Ethics for Medical Research: General Principles. http://www.sahealthinfo.org/ethics/index.htm (Accessed 17/10/2006).

75.

Tarter

R.E.

Mezzich

A.C.

Hsieh

Y-C.

, & Parks

S.M.

(1995). Cognitive capacity in female adolescent substance abusers. Drug and Alcohol Dependence, 39, 15–21.

76.

Thompson

(1996). Paying respondents and informants. Social Research Update, 14. http://www.soc.surrey.ac.uk/sru/SRU14.html (Accessed 18/10/2006).

77.

Tishler

, & Bartholomae

(2002). The recruitment of normal healthy volunteers: A review of the literature on the use of financial incentives. Journal of Clinical Pharmacology, 42, 363–373.

78.

Toumbourou

J.W.

Evans-Whipp

Clements

McMorris

B.J.

Mathers

, & Catalano

R.F.

(2004). Ethical guidelines for the payment of research participants should be clarified: Reflections from cross-national research. Australian and New Zealand Journal of Public Health, 28(6), 584–585.

79.

Ulrich

C.M.

Danis

Koziol

Garrett-Mayer

Hubbard

Grady

(2005). Does it pay to pay? A randomized trial of prepaid financial incentives and lottery incentives in surveys of nonphysician healthcare professionals. Nursing Research, 54(3), 178–183.

80.

van Gelderen

Savelkoul

van Dokkum

, & Meulenbelt

(1993). Motives and perceptions of healthy volunteers who participate in experiments. European Journal of Clinical Pharmacology, 45, 15–21.

81.

Weisse

K.L.

Smith

M.L.

Mascke

K.J.

Copeland

H.L.

(2002). National practices regarding payment to research subjects for participating in pediatric research. Pediatrics, 110, 577–82.

82.

Wilkinson

& Moore

(1997). Inducement in research. Bioethics 1997, 11, 373–89.

83.

Wright

Klee

, & Reid

(1998). Interviewing illicit drug users: Observations from the field. Addiction Research, 6, 517–35.