Over the past decade or so a fascinating social movement has emerged with huge implications for how scientific research and medical practice will be conducted in the future. Smart citizens are increasingly taking on more of the responsibility for their own healthcare as well as that of their families and friends rather than relying solely on the input of doctors and scientific investigators.
So-called “citizen scientists” are tapping into the power of the internet and exchanging information among like-minded individuals to learn more about specific diseases, often genetic disorders, usually in response to general dissatisfaction with the medical and research establishment as a whole. The movement is the latest manifestation of regular people who share a focused interest and who want to contribute more knowledge that will improve the understanding of that specific interest. For example, citizen scientists previously have formed associations where they investigate and provide information to scientists on subjects such as bird migrations, global warming, and their observations of various astronomical events.
But now citizen scientists are quickly invading the domain once solely under the purview of researchers and doctors. Based on a disease diagnosis of a family member or friend, these folks are creating geographically spaced but tightly bound groups assembled to work on understanding the scientific underpinnings of a particular disease, how that disease is currently treated, and what the prospects are for novel therapies. Many of these citizen activists have no formal scientific training at all but substitute instead a burning determination to do all they can to increase the odds of successfully dealing with whatever disease or genetic disorder that turned them into activists in the first place.
Take autism, for instance. There have been a number of examples of parents with an autistic child who, for various reasons, were not happy with the type of advice they received from the pediatrician on how to best treat the disease. The parents then decide to form a network-support group and contact other parents with autistic offspring. Blood samples are collected from all the autistic children who are part of the project and put into a type of biobank. Medical records and clinical trials are also placed into the database. The data is raw and waiting to be analyzed.
All this information is then put online and researchers are invited to study the data. The researchers then search for genes and biomarkers associated with the disease and contact their colleagues who are working on the same medical condition. Then, unlike the case with most medical investigators who guard their research results and limit what they place in the public domain, citizen scientists require that all the researchers cooperating with their specific study make all the data obtained through study freely available to all interested parties. The citizen groups believe this is the most effective way of moving forward on new treatment strategies for a range of diseases.
A number of doctors and researchers oppose this movement. They say the lack of a scientific background on the part of many citizen groups and the manner in which they go about collecting blood and other clinical specimens is by its nature unscientific and biased. They have two good points here, and these kinds of issues need to be considered as the citizen scientist phenomenon continues to grow.
But citizen scientists point out that as a group they sometimes know more about the disease in question than the researchers with whom they might initially be working because the scientists are often so zeroed in on one particular aspect of a disease that they don’t see the scientific forest for the trees.
I believe citizen scientists are here to stay. They have much to offer to the worlds of science and medicine. I also believe that with both sides having their own limitations, the ideal solution for everyone involved is to work together as closely as possible.