" 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

BACKGROUND This article examines the ethical implications of using respondent-driven sampling (RDS) to conduct HIV behaviour surveillance among injection drug users (IDUs) in Chicago. Ethnographic inquiry illustrates how the design and implementation of RDS invites if not promotes manifold violations of federal guidelines governing human research subject protections. METHODS Post hoc structured interviews with approximately 13% (n=70) of the behaviour surveillance sample (N=529) focused on how RDS's "dual incentive" structure affected participants' social, economic, and cultural milieu. Triangulated methods include interviews with owners of 20 "shooting galleries", unofficial and illegal locales where IDUs congregate and 400 h of traditional ethnographic observation of individual IDUs and IDU networks. "Consensus analysis" allows identification of key cultural domains that define the RDS coupon market. RESULTS The study reveals the power of RDS to foment a stratified market of research participation that reinforces pre-existing economic and social inequalities among IDUs. Participants co-opted RDS to develop various "underground" revenue-generating modalities that produced differential risks and benefits among participants. Deleterious outcomes include false advertising regarding the study's risks and benefits, exploitation of relative economic deprivation, generation of sero-discordant social networks, and interpersonal and organised conflict, coercion, and violence. CONCLUSION Although RDS may involve serious ethical violations it remains the best available means for accruing a representative sample of hidden populations. It is critical, however, to supplement RDS with research into (1) the subjects' cultural, social, economic, and political contexts, (2) the potential human subjects violations that participants experience, and (3) how these two issues might affect data integrity and interpretation.

[1]  N. W. Barker,et al.  The natural history of a heroin epidemic. , 1972, American journal of public health.

[2]  H. Finestone,et al.  CATS, KICKS, AND COLOR* , 1957 .

[3]  Matthew J. Salganik,et al.  5. Sampling and Estimation in Hidden Populations Using Respondent-Driven Sampling , 2004 .

[4]  J. Fitzgerald,et al.  Confidentiality, disseminated regulation and ethico-legal liabilities in research with hidden populations of illicit drug users. , 1997, Addiction.

[5]  Douglas D. Heckathorn,et al.  Respondent-driven sampling II: deriving valid population estimates from chain-referral samples of hi , 2002 .

[6]  Douglas D. Heckathorn,et al.  Respondent-driven sampling : A new approach to the study of hidden populations , 1997 .

[7]  P. Biernacki,et al.  TARGETED SAMPLING: OPTIONS FOR THE STUDY OF HIDDEN POPULATIONS , 1989 .

[8]  M. Spreen.  Rare Populations, Hidden Populations, and Link-Tracing Designs: What and Why? , 1992 .

[9]  S. Friedman,et al.  Estimating numbers of injecting drug users in metropolitan areas for structural analyses of community vulnerability and for assessing relative degrees of service provision for injecting drug users , 2004, Journal of Urban Health.

[10]  T. Seddon.  Paying drug users to take part in research: Justice, human rights and business perspectives on the use of incentive payments , 2005 .

[11]  T. G. Pierce.  Gen-X junkie: ethnographic research with young White heroin users in Washington, DC. , 1999, Substance use & misuse.

[12]  N. Hoffart.  Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory , 2000 .

[13]  S. Holmberg,et al.  The estimated prevalence and incidence of HIV in 96 large US metropolitan areas. , 1996, American journal of public health.

[14]  Wiebel Ww.  Combining ethnographic and epidemiologic methods in targeted AIDS interventions: the Chicago model. , 1988 .

[15]  R. Dwyer,et al.  For love or money? An exploratory study of why injecting drug users participate in research. , 2001, Addiction.

[16]  Jennifer Lauby,et al.  Street and network sampling in evaluation studies of HIV risk-reduction interventions. , 2002, AIDS reviews.

[17]  L. Thorpe,et al.  Prevalence and Incidence of HIV Among Out‐of‐Treatment Injecting Drug Users, Chicago 1994‐1996 , 2000, Journal of acquired immune deficiency syndromes.

[18]  C. Grady,et al.  Money for Research Participation: Does It Jeopardize Informed Consent? , 2001, The American journal of bioethics : AJOB.

[19]  Wiebel Ww,et al.  Identifying and gaining access to hidden populations. , 1990 .

[20]  S. Berg.  Snowball Sampling—I , 2006 .

[21]  W. Wiebel.  Combining ethnographic and epidemiologic methods in targeted AIDS interventions: the Chicago model. , 1988, NIDA research monograph.

[22]  A. Strauss.  Basics Of Qualitative Research , 1992 .

[23]  Douglas D. Heckathorn,et al.  Drug Users versus Outreach Workers in Combating Aids: Preliminary Results of a Peer-Driven Intervention , 1995 .

[24]  C. Fisher.  Ethics in Drug Abuse and Related HIV Risk Research , 2004 .

[25]  W. Wilson.  The Truly Disadvantaged , 1987 .

[26]  S. Friedman,et al.  HIV infection and intravenous drug use: critical issues in transmission dynamics, infection outcomes, and prevention. , 1988, Reviews of infectious diseases.

[27]  E. Sobo,et al.  Using methods in the field : a practical introduction and casebook , 1998 .

[28]  Douglas D. Heckathorn,et al.  AIDS Prevention Outreach Among Injection Drug Users: Agency Problems and New Approaches* , 1994 .

[29]  S. Friedman,et al.  Street-level drug markets: Network structure and HIV risk , 1995 .

[30]  A. Hoffman.  American Project : The Rise and Fall of a Modern Ghetto , 2000 .

[31]  Sudhir Alladi Venkatesh,et al.  American Project: The Rise and Fall of a Modern Ghetto , 2002 .

[32]  Observations on the Importance of Social Context in HIV Transmission among Intravenous Drug Users , 1989 .

[33]  W W Wiebel,et al.  Identifying and gaining access to hidden populations. , 1990, NIDA research monograph.

[34]  Robert Joseph Taylor,et al.  All Our Kin: Strategies for Survival in a Black Community , 2000 .

[35]  Robert Heimer,et al.  Critical Issues and Further Questions About Respondent-Driven Sampling: Comment on Ramirez-Valles, et al. (2005) , 2005, AIDS and Behavior.

[36]  D. Huo,et al.  Needle Exchange and Injection-Related Risk Behaviors in Chicago: A Longitudinal Study , 2007, Journal of acquired immune deficiency syndromes.