Involving Subjects in Research: The Public, Participants, Service Users and Carer Groups

Abstract

Although the focus of much of ethical scrutiny and ethical decision-making relates to the minimisation of harm to research subjects, we sometimes do not think enough about how, by their more effective inclusion in research design, planning, data gathering, analysis and dissemination, they can participate more in the process and so contribute to their own minimisation of harm. We pay token allegiance to this when we label them ‘stakeholders’ or ‘participants’ but not if they are not allowed effective opportunities to contribute. In some research traditions they can become full collaborators or co-researchers.