Giving Voice Versus Gatekeeping: Negotiating Complexities in Research Collaborations

Abstract

This paper explores the potential for conflict within research collaborations with particular regard to the ethical principle of respect (as described in the Belmont Report) that individuals should be treated as autonomous agents yet those with diminished autonomy must be protected. In conducting research with young women on risk and resilience, including sensitive topics such as self-harm and sexual abuse, a number of challenges have arisen. These include access, recruitment, the development of trust, and managing potential vulnerability. At the same time, participants frequently report benefits from participation, even when distress is experienced. Although collaborating with service providers with which potential research participants engage may reduce some of these difficulties, other tensions frequently arise. Further, research on sensitive topics and/or with vulnerable people poses specific ethical difficulties. These include tensions between researcher and participant needs, such as conveying the possibility of distress while not discouraging participation and staying within the confines of the research topic (as described to ethics review boards and funders) versus allowing participants to influence the direction of the research. Service providers are often cognisant of some of these possible issues and may take on a gatekeeper role through a desire to protect their clients. In so doing, the autonomy of potential participants is diminished. Thus, the development of trusting relationships on the part of both collaborating services and participants is key to the opening of research spaces. The challenges of complex and competing needs in research collaborations will be examined.