Details descriptions of the session:
Health research is a vital component of the fight to improve health worldwide. But the available resources for research are far outstripped by the valuable research questions that need to be answered. Which research is conducted affects which populations ultimately benefit from the knowledge generated by the research. The question of how to allocate limited health research resources is therefore an ethical question, not just a technical one. At present, however, many governmental and non-profit funders treat this as a primarily technical matter—for example, untargeted funding is largely allocated on the basis of the quality of the science, rather than the burden of disease or patients’ values. Further, when funders do set priorities for which research they will fund, the methods used for setting those priorities are generally opaque. Consequently, it is unlikely that research priorities are currently being set in an ethically optimal way.
The World Health Organization recently convened an expert writing group to craft guidance on the ethics of research priority-setting. This guidance is being developed in close consultation with stakeholder groups around the world. Its aim is to provide a framework to assist the relevant actors—from individual researchers to national governments—in thinking through the questions that need to be answered in order to set priorities in an ethically justified way. These include:
- Questions about process, such as how to think about who should be involved in priority-setting exercises, what genuine participation and engagement entail, and at what points different stakeholder groups should be included;
- Questions about substantive criteria, such as what the scope of priority-setting exercises should be, what are the ultimate aims of priority-setting, and how to understand equity in this context.
Learning objectives:
- Present draft WHO guidance on the ethics of health research priority setting.
- Obtain feedback from experts and practitioners on the ethical basis and the practical utility of the guidance.
Target audience:
- Policy-makers, researchers, anyone who would like to improve the efficiency of their healthcare system
Structure of presentation:
The draft guidance will be made available ahead of the session. The structure will be as follows:
- The authors will present the draft guidance (15 mins)
- Critical responses from a panel of experts (15 mins)
- Clarificatory Q&A with workshop participants (10 mins)
- Small group work reflecting on the applicability and utility of the guidance to national contexts and disciplinary contexts. Each group’s discussion will be moderated by one of the panel. (20 mins)
- Small groups report back to the main group. (15 mins)