What women who use drugs have to say about ethical research: findings of an exploratory qualitative study

Abstract

Drug users are generally seen as a vulnerable population requiring special protection in research; however, to date there has been little empirical research into the ethics of research with illicit drug users. Moreover, the available research has tended to treat "drug users" as a homogeneous category, and has failed to consider potential gender differences in users' experiences. Drawing on focus groups with twenty-seven female drug users in Vancouver, Canada, this study examines women's experiences of research and what they see as ethical and respectful engagement. Many study participants talked about feeling dehumanized as a result of prior research participation. Women were critical of the assumption that drug users lack the capacity to take part in research, and affirmed the appropriateness of financial incentives. A variety of motivations for research participation were identified, including a desire for financial gain and altruistic concerns such as a desire to help others. These findings suggest that women drug users' views on ethical research differ from prevailing assumptions among institutional review boards about how research with such populations should proceed.