The ethics of survivor research

This guide is an accessible manual on ethical practice for research from the perspective of mental health service users and survivors. There is a distinction to be made between survivor controlled research and 'user/consumer involvement in research', and the focus of these guidelines is on the former. However, many of the ethical issues are common, making the guidelines valuable in the support of the Research Governance Framework (Dept of Health, 2001), which encourages the involvement of consumers in research. The guidelines are not intended as rules, but as helpful guidance on some of the difficult and important issues to be considered prior to a research project or research training programme. There are helpful hints and suggestions, as well as quotations and ideas reflecting the experience of people who were consulted for the development of the guidelines. Considerable time and space is given to such key ethical issues as informed consent and confidentiality with particular reference to mental health settings. However, the guidelines also address a number of less commonly discussed issues such as feedback to participants, dissemination and a commitment to change based on research findings.