A FEW months ago, we got a call from a former oncology professor of ours. He had developed an experimental precision diagnostic test that he thought would be able to determine which chemotherapies would be most effective against a patient’s cancer. He wanted to conduct a research trial to evaluate the effectiveness of the new test. But there was one big problem: The research had no funding.
He wanted our view on whether it would be legal and ethical if he charged the patients about $30,000 each to pay for the research.
This idea is not as outlandish as it sounds. In the 1980s some for-profit companies and institutes charged patients for participating in research. Mostly they went bust. Recently, others have proposed that the rich buy places in clinical trials. And now scientists have begun thinking this may be a way to fund promising research ideas.
The rationale behind the request was understandable. The researchers were frustrated. Ideas about potential tests and treatments for diseases like cancer, multiple sclerosis and Alzheimer’s disease are not being tried out because of a lack of research funds. If a research study otherwise fulfilled all the requirements for a good scientific and ethical study — it has a clear and compelling hypothesis, a detailed protocol, would be reviewed by the cancer center’s research ethics committee, all participants would sign informed consent documents and the results, positive or negative, would be disseminated in the scientific literature — why shouldn’t patients be charged?
Supporters have what appears to be a good case. Charging would result in more research, and the more research that is done, the more society learns about which drugs, devices and diagnostic tests work and which don’t. By charging, otherwise fallow ideas could be tried. And even if the results are negative, society learns what leads not to pursue. This kind of “pay-to-play” research would be a form of crowdfunding, a kind of Kickstarter for clinical research.