Patients who donate their bodies to science and/or agree to participate in clinical trials are my heroes. I say that with the conviction of a scientist who has directly benefited from their benevolence. To do the research that I do on stroke I have collected hundreds of litres of human Cerebral Spinal Fluid (CSF) from over 200 patients. With this large repository of CSF, my team and I have discovered a new family of molecules in stroke patients that may be the cause of lethal stroke complications.

I could have never made that discovery without the generosity of the patients and their families. With work, and luck, the I may be able to save the lives of thousands of stroke patients in the USA annually. Some day in the not too distant future companies will be making devices and drugs designed to diagnose and treat stroke complications based on the molecules we’ve discovered in the CSF of those 200 stroke patients.

There is a growing concern in research about activities like mine. That is, some people think that the discoveries made with a patient’s samples belong to the patients and not the scientists who toil for years to make possible life saving discoveries.

The argument from lawyers becomes convoluted and suggests that the patients’ own whatever is discovered after donating bodies and tissues to science. Some are saying that if the scientists do not completely explain that new the things found in the samples will be sold to companies to make devices and drugs then the patients’ own the new molecules and discoveries. Scientists are also required to try to explain what those new discoveries will be before doing the research, which is pretty much impossible. The scientists have two responses to this. First we can’t predict what if any discovery will be and second; I’m not doing the research to “own the discoveries” because the University owns all of my discoveries.

If I’m not allowed to work on my discoveries than why should I try to discover things? Lawyers are taking away my incentive to make discoveries. To protect against such ownership disputes many universities now have a huge legal document signed by patients, donors and their families to transfer all ownership to the University. These documents can become so thick and onerous that patients and families refuse to participate any longer because of the sheer volume of words and fear of signing legal documents. The result is that the lawyers are now making it such that I cannot get samples to do my research.

That is just sad.

My career went from a scientist trying to work with patients and families in search of answers as to the causes of stroke complications to being made to feel like a thief stealing from unwitting victims for my own personal gain. Nonetheless to the patients and their families who donate; thank you. You are my heroes.