Investigators: Professor Heather Draper; Alexander Masters; Dominic Nutt; Simon Bowman.

Health research is fundamental in the advancement of medical knowledge. Clinical research is often very expensive and there are limited funding available. Commercial companies will usually only fund research that will make a profit. Funding from research councils or charities is very competitive. This means that many promising new treatments or interventions that could potentially benefit patients cannot be tested – especially for rare conditions that affect fewer people. Only when potential treatments have been tested and demonstrated to be effective can they be made available to patients.

One suggestion for helping to bridge the funding gap is for very wealthy individuals to fund clinical trials into conditions that affect themselves or people close to them. This kind of ‘donor funding’ differs from charitable donation. The difference is that the donor funds the whole trial so that they, or their friend/family member, can take part.

There is little ethical literature on this model, but donor funding of any kind is controversial. To some people it seems unfair to allow the wealthy to buy a place on a trial when a poorer person wouldn’t be able to afford to do so. Others are concerned that a study would be designed around the donor, leading to poor scientific validity. The main advantages of donor funding are that it creates opportunities to take part in research for other patients too, and that it funds research that otherwise would not go ahead.

This project will explore the ethical issues that are relevant to research ethics committee (REC) review. Some of the work will be philosophical. We will also gather the views of stakeholders such as researchers, REC members, and user groups. This will be done in focus groups. We want to know how UK RECs would respond to research applications that are donor funded. We will explore potential concerns to determine whether these could be addressed in applications. We will also consider how UK RECs ought to respond, given their remit. We hope that the results will be useful for the Health Research Authority ahead of applications using donor funding being made.

Study documents

Participant information sheet

Short video about the study and donor funding

News

We are working with Alex Smith to try and find the extent to which donor-funds might be a way to fund clinical trials with NHS patients. Read more here.

This work is supported by the UK SPINE, a project funded by Research England’s Connecting Capability Fund