Pharmaceutical industry, academia and people with experience of mental illness as partners in research: a need for ethical guidance

Abstract

Background: Several social and policy developments have led to research partnerships in mental health research, which depart from traditional research models. One form of such partnerships is among research institutions, industry (pharmaceutical and biotech) and people with lived experience of mental illness (RIPs). There are several benefits but also ethical challenges in RIPs. An ethics-based approach to anticipating and addressing such ethical issues in mental health research is lacking. Given the expansion of RIPs in treatment development for mental health illness, guidance to support ethical and trustworthy collaborative mental health research projects is essential. Methods: To develop a moral framework for evaluating the ethics of RIPs, we systematically searched PubMed for peer-reviewed literature discussing good practices in research partnerships. Searches were also conducted in websites of known organizations supporting patient engagement with industry in mental health research and in the references of short-listed articles. Following application of exclusion criteria, remaining articles were critically examined and summarised to synthesise principles for ethically acceptable RIPs and inform clear guidance and practices. Results: Critical analysis and synthesis of the short-listed articles highlighted the need for two sets of principles to guide ethical RIPs: principles for (a) RIPs as a trustworthy enterprise (e.g. public accountability, transparency) and (b) fair RIPs (e.g. effective governance, respect). We discuss the application of these principles in problem-solving strategies that can support best practice in establishing fair and successful mental health research partnerships among research institutions, industry and people with lived experience of mental illness. Conclusions: Ethical guidance is needed to prevent and address challenges in RIPs and to promote the scientific and social benefits of these new research partnership models in mental health research. We show how the proposed moral framework can guide research partners in designing, sustaining and assessing ethical and trustworthy collaborative mental health research projects.