In peer-driven recruitment (PDR) research subjects recruit new subjects. These subjects, in turn, may recruit additional subjects. In some cases, the process may repeat for successive waves. Often, subjects are paid or given other incentives to recruit their peers. As an approach to recruitment, PDR can be a very effective tool—some difficult to reach populations (examples might include: sex workers, immigrants, abuse victims, and others) are more likely to participate in a research study when engaged by a “peer.” However, when subjects are recruited by their peers, researchers should be aware of potential ethical problems. For example, if peers are “driven” by money to recruit new subjects from their social networks, they may be tempted to take shortcuts when acquiring consent and conducting other responsible research practices. At the same time, one’s peers (perhaps, particularly when from a tight social network) are not always the best people to entrust with confidential information. Privacy prefers anonymity.
In their recent paper, “Community members as recruiters of human subjects: ethical considerations,” Simon and Mosavel explore these issues and provide an account of a variant version of PDR (Am J Bioeth. 2010 Mar;10(3):3-11. PubMed PMID: 20229402). The authors identify four ethical concerns worth consideration prior to employing peers in subject recruitment: 1) PDR without comprehensive community engagement in the research project can devalue the role of community participation; 2) as “insiders,” peer recruiters may inadvertently bias the sample; 3) maintaining privacy and confidentiality in intimate communities; and 4) “the potential for exploitation of peer recruiters and/or their social networks, particularly in cases where peer recruiters are compensated on a per-capita basis.”
Simon and Mosavel offer what they consider to be a variant version of PDR which (although not without its challenges) is less susceptible to ethical difficulties. In a “resource-poor community” near Cape Town, South Africa, the authors conducted a study of the health knowledge and attitudes of women regarding cervical cancer. With a pre-existing, intensive community engagement program in place, the project hired “community members” to work as research staff. Seven, bilingual women were hired from the neighborhood and received training which included sessions addressing the ethical conduct of research. These new research staff members helped to troubleshoot the study design, revised and translated the informed consent forms, consented subjects, and conducted the research interviews in the subjects’ homes.
Some staff members were emotionally distressed following interviews with women living with illness or in unhealthy environments. To develop stress-related coping strategies, the team met with a trained psychologist, kept diaries, and (when appropriate) distributed a list of local support services to interviewees. Over the three year lifecycle of the research, only one staff member left. When the project was complete, some staff members received help from the PIs in finding new employment opportunities.
Although Simon and Mosavel’s account of a community engaged research project in Cape Town, South Africa is certainly a memorable and instructive narrative, and although their review of the ethical issues inherent in PDR is informative, the article struggles to bring these topics together. The research team hired in Cape Town may have been from the “community,” but they were not “peers”—as staff they were not subjects, nor were they “driven” by incentives to recruit new subjects. This variant of PDR is not “peer,” not “driven” and not really “recruitment.” Nevertheless, Simon and Mosavel’s recommendations are worth considering for future PDR projects and other forms of community-based research employment: ethical training, ongoing support, and the anticipation challenges related to researcher/subject proximity.
Simon C, Mosavel M. Community members as recruiters of human subjects: ethical considerations. Am J Bioeth. 2010 Mar;10(3):3-11. PubMed PMID: 20229402.
Open Peer Review Commentaries on Simon and Mosavel:
Landy DC, Sharp RR. Examining the potential for exploitation by local intermediaries. Am J Bioeth. 2010 Mar;10(3):12-3. PubMed PMID: 20229405.
Phillips T. Protecting the subject: PDR and the potential for compromised consent. Am J Bioeth. 2010 Mar;10(3):14-5. PubMed PMID: 20229406.
Fry CL. Ethical implications of peer-driven recruitment: guidelines from public health research. Am J Bioeth. 2010 Mar;10(3):16-7. PubMed PMID: 20229407.
Bean S, Silva DS. Betwixt & between: peer recruiter proximity in community-based research. Am J Bioeth. 2010 Mar;10(3):18-9. PubMed PMID:20229408.
Anderson EE. The role of community-based organizations in the recruitment of human subjects: ethical considerations. Am J Bioeth. 2010 Mar;10(3):20-1. PubMed PMID: 20229409.
Constantine M. Disentangling methodologies: the ethics of traditional sampling methodologies, community-based participatory research, and respondent-driven sampling. Am J Bioeth. 2010 Mar;10(3):22-4. PubMed PMID: 20229410.
Molyneux S, Kamuya D, Marsh V. Community members employed on research projects face crucial, often under-recognized, ethical dilemmas. Am J Bioeth. 2010 Mar;10(3):24-6. PubMed PMID: 20229411.
Simon C, Mosavel M. Response to open peer commentaries on “community members as recruiters of human subjects: ethical considerations”. Am J Bioeth. 2010 Mar;10(3):W1-3. PubMed PMID: 20229401.
Related Links and Literature:
Respondent Driven Sampling [Cornell]
DeJong J, Mahfoud Z, Khoury D, et al. Ethical considerations in HIV/AIDS biobehavioral surveys that use respondent-driven sampling: illustrations from Lebanon. Am J Public Health. 2009 Sep;99(9):1562-7. PubMed PMID: 19608961.
Semaan S, Santibanez S, Garfein RS, et al. Ethical and regulatory considerations in HIV prevention studies employing respondent-driven sampling. Int J Drug Policy. 2009 Jan;20(1):14-27. PubMed PMID: 18243679.
Scott G. “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. Int J Drug Policy. 2008 Feb;19(1):42-51. PubMed PMID: 18226516.
Tiffany JS. Respondent-driven sampling in participatory research contexts: participant-driven recruitment. J Urban Health. 2006 Nov;83(6 Suppl):i113-24. PubMed PMID: 16933100.
Brace-Govan J. Issues in snowball sampling: the lawyer, the model and ethics. Qualitative Research Journal. 2004;4(1):52-60. informit.com.au