Earlier today I was doing a little Googling looking for information that I plan to use for a thesis project when I came across a blog about the science of Parkinson’s Disease. At first I was really excited since I rarely see blogs about the science of specific diseases and I feel those are very much needed in today’s serious state of scientific misinformation. After the initial surprise of its existence, I actually made the mistake of reading the blog. I was not only disappointed, but saddened as well.
My disappointment was less about the apparent state of research and more about how research (and researchers) is presented to patients and their families. How and why biological research is conducted is largely a mystery to the vast majority of even the most educated people. What disappointed and distressed me most was how research was perceived by this patient. It was of the “why aren’t you doing this?” mentality that I find is quite pervasive in online patient communities of all diseases I’ve come across. This idea that we researchers are not really interested in certain questions about disease progression and pathology are partially correct but largely misguided, and often perpetuated by the perceived lack of progress in curing the disease in question.
It is true that scientists often halt seemingly promising lines of research much to the dismay of patients suffering from a debilitating disease, but it is not because we do not care. Instead, we do it because it makes sense scientifically and financially. If it doesn’t seem to be a fruitful endeavor then there is no point to keep wasting very valuable time and money pursuing it. There is also a simple reason we do not let patients dictate our research direction: they do not understand the science behind their disease. This is not an insult, but a simple fact. These are very complicated matters that take years of training in order to just begin to understand, and to expect a patient with little knowledge of biology to truly understand the research is unreasonable. That is why we don’t expect them to understand the underlying pathophysiology of their disease. However, patients oftentimes feel they understand more than they do (a little bit of knowledge…) due to their intimate knowledge of their disease. I cannot blame them, but I do wish they would have a little humility and acknowledge that there are plenty of professionals out there who have studied their disease for years in order to understand and, hopefully one day, conquer it.
Though most of us scientists got into research due to simple human curiosity it does not mean we don’t care about the real world implications of our work. We’re working hard not just for ourselves, but also because we know it makes a difference not only in the lives of patients, but also other scientists, and humanity at large.
Overall, I wish the author of the above blog the best in his/her treatment and that this post may help explain a bit of why we do what we do, but I also wish that some of the opinions of the author are changed for the better.