Institutional ethical review and ethnographic research involving injection drug users: A case study

Abstract

Ethnographic research among people who inject drugs (PWID) involves complex ethical issues. While ethical review frameworks have been critiqued by social scientists, there is a lack of social science research examining institutional ethical review processes, particularly in relation to ethnographic work. This case study describes the institutional ethical review of an ethnographic research project using observational fieldwork and in-depth interviews to examine injection drug use. The review process and the salient concerns of the review committee are recounted, and the investigators’ responses to the committee’s concerns and requests are described to illustrate how key issues were resolved. The review committee expressed concerns regarding researcher safety when conducting fieldwork and the investigators were asked to liaise with the police regarding the proposed research. An ongoing dialogue with the institutional review committee regarding researcher safety and autonomy from police involvement, as well as formal consultation with a local drug user group and solicitation of opinions from external experts, helped to resolve these issues. This case study suggests that ethical review processes can be particularly challenging for ethnographic projects focused on illegal behaviours, and that while some challenges could be mediated by modifying existing ethical review procedures, there is a need for legislation that provides legal protection of research data and participant confidentiality.

Challenges to Studying Illicit Drug Users

“…However, protectionist concerns are often overstated (Anderson & DuBois, 2007 ;Small et al, 2014 ). Wellintentioned attempts to protect participants may markedly hinder research and severely impede their recruitment and participation in important research.…”

“…This results in researchers' inability to obtain information that is actually of potential benefi t to individual participants, their communities, and society as a whole (Anderson & DuBois, 2007 ;Bell & Salmon, 2011 ). Greater involvement of individuals from the affected community of drug users in the ethics review process can help to correct some of these issues (Bell & Salmon, 2011 ;Small et al, 2014 ). Often ethics board members have little understanding of the realities of drug users' lives (Bell & Salmon, 2011 ), and therefore, representation from drug user communities as advisory members in the ethics review process could improve understanding (Australian Injecting and Illicit Drug Users League, 2012 ).…”

“…Even when protective measures are taken to ensure participant confidentiality, in some countries researchers may be compelled by the courts to provide study information to law enforcement. The ability of a researcher to protect the anonymity of participants and confidentiality of the information is paramount for substance use research; however, the ability of the researcher to maintain confidentiality is often limited by the regulatory frameworks governing the research (Small, Maher, & Kerr, ). Unlike physician–patient and attorney–client relationships, the researcher–participant relationship is not privileged, and therefore is not provided the same protections for absolute confidentiality (Stone, ).…”

Aspectos éticos de la investigación etnográfica en salud. El papel del comité de ética de la investigación

“…Sin embargo, la difusión de los detalles recolectados durante la inmersión etnográfica puede ser el momento en el que, por ejemplo, el derecho a la intimidad y al libre desarrollo de los miembros de un grupo particular se vea vulnerado por la difusión de la investigación, dado que una vez los resultados estén en poder del público la posibilidad de señalamientos, estigmatización, invasión a la privacidad y ruptura de la confidencialidad son riesgos reales que surgen, precisamente, de la capacidad de la técnica investigativa de pormenorizar y exponer con profundo detalle al grupo de interés (33,46,47).…”

“…así como dónde, por cuánto tiempo y quién será el custodio de los datos y de la información derivada; 6) descripción sobre los procesos de anonimización de la información; 7) financiación del estudio; 8) implicaciones econó-micas, si las hubiera, para los sujetos; 9) información de contacto suministrada a los sujetos; 10) métodos de identificación de los sujetos; 11) instrumentos para contacto con los sujetos (cartas, avisos publicitarios, mensajes en redes sociales, etc. ); 12) instrumentos de recolección de datos (encuestas, entrevistas, cuestionarios, libretas telefónicas), junto con una evaluación del potencial riesgo de poner a los sujetos en situaciones embarazosas, de estigmatización, señalamiento, segregación, discriminación o en riesgo de persecución policial o judicial; 13) planteamiento o posición del investigador sobre el consentimiento informado junto al propio formulario del consentimiento, si se requiere; 14) planteamiento o posición frente a la participación de menores de edad, asentimiento y participación de los padres en el proceso; 15) planteamiento y posición del investigador sobre publicaciones y difusión de resultados (8,(30)(31)(32)(33)(34).…”