Evaluating the Ethics of Patient and Public Involvement in Medical Research and Resource Allocation

In the last 15-20 years, support for involving patients and “lay” members of the public in decisions about medical research and how to allocate scarce medical resources has increased.

In some countries, like the United Kingdom, the belief that members of the public should have a direct say in these matters has grown so strong that significant quantities of national funding for research and operations are contingent on implementing strategies to increase involvement. This backing for “Patient and Public Involvement” (PPI) can generally be separated into one of two categories: (1) A utilitarian “consequence-based” argument that maintains that members of the public make positive contributions (at little cost) that increase the quality of medical research or resource allocation. (2) A deontological or “rights-based” argument that holds that members of the public have an implicit right to participate in these decisions as members of a liberal democracy. As this impulse towards greater involvement has developed, scholarly research has focused less on whether to involve and instead on how to involve, asking questions about which methods of involvement are more effective, produce higher quality research, etc.

The goal of this project is to take one step backwards and investigate the merits of the two aforementioned claims. Most fundamentally, the question we are seeking to address is not whether involvement ever aids the allocation or research design processes, but rather whether it should stand as society’s default orientation towards them.