The Power of Hope
December 2, 2008 by Ian Clarke
I want to discuss the power of hope. I recently read an article in a national newspaper about a family who was traveling to China to receive stem cell therapy to restore their child’s vision. This child had been born blind as a result of a developmental defect that results in the optic nerve failing to develop normally. As a research scientist who studies brain stem cells and cancer stem cells, I was surprised to learn that hospitals in China were offering stem cell treatments to patients. The stem cells that generate the eye and optic nerve are very similar to the brain stem cells that I study. In this case, the first reports to suggest that this therapy may work came just within the last few years in studies on rats and mice.
When I did some further research I found that there were dozens of similar news stories from all across America and Canada where patients were leaving our healthcare systems to receive treatment in China, India, Mexico and the Caribbean just to name a few. Many of these companies were reporting stem cell treatments and cures for a wide range of diseases. What startled me the most is the thought that I may have missed the scientific literature that showed these treatments are effective. I was stunned to find out that in most cases there is no scientific studies to support these treatments. While there are a few promising new stem cell treatment already being used in humans, most are still at the early experimental stage. I was saddened to learn that in most cases the patients and parents are being charged large sums of money for these completely unproven, and in some cases completely untested, treatments. In almost every case there is no monitoring or public records allowing the scientific community to evaluate the effectiveness of these treatments.
This is where hope comes in. When patients and families have no effective treatments for debilitating or even fatal diseases, they want hope. They deserve hope. Unfortunately what they are often receiving is extortion. Hope can make us blind to logic and ignore evidence contrary to the outcome we desire. The way forward in science is to do carefully controlled experiments and careful clinical trials. No new treatment comes without potential risks, if someone tells you a treatment is “risk free” they are likely not telling you the whole truth. The question is of balancing potential risks with potential benefits, and this is where the idea of “informed consent” has derived from. In some cases the proposed treatments may actually cause more harm than the original disease, in other cases the treatments may be a breakthrough that saves the health and lives of many sick people. What is most important is that the process be evaluated on the scientific merits. We have seen several cases recently where drugs and treatments have been recalled after careful scientific scrutiny determined they did more harm than good. Many patients would have been harmed if this scientific process had not been allowed to take place.
Patients and families deserve hope, but they do not deserve to be lied to. I believe that the stem cell research we do will lead to groundbreaking new treatments for brain cancer, nerve repair, and degenerative diseases such as Parkinson’s disease and Alzheimer’s, but only if we can do proper science and clinical trials to further our knowledge in a responsible way. Stem cell research fills me with great hope for the future, but loathing for the few irresponsible people who would exploit that hope for personal gain at the expense of the patients who deserve the best we can give them.
Dr. Ian Clarke is research scientist in the lab of Dr. Peter Dirks at SickKids, a teacher at the Ontario College of Art and Design and a practicing artist.
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