Everyday, thousands of altruistic men and women participate in clinical research projects. They carefully fill out questionnaires, give samples of tissue or body fluids, and take drugs or placebos, all in an effort to improve our understanding and/or our treatment of diseases. Terrific advances have resulted from these efforts, such as the use of Herceptin to treat breast cancer or the identification of HPV as the cause of cervical cancer. But there are also many potential advances that have not been made precisely because, unlike preschoolers, many clinical researchers have not learned how to share!
Information and tissue samples are taken from patients with all sorts of diseases, from Alzheimer’s and depression to cancer and heart disease. New technologies have made it possible for scientists to combine the molecular data collected from these patients’ samples with data from clinical trials, and, almost like a massive jigsaw puzzle, piece together new therapies and figure out who should get which drugs which is wonderful.
The problem is that this clinical trial data are typically collected by drug companies or academics specifically for their own trials on their own new potential medicines or pet theories. This means the data is often locked away in proprietary silos, where only select scientists get to use it. Drug companies and universities argue that because the data they get from the patients’ samples have monetary value they should not have to share it with their competitors. Yet, even when a company changes its business model or is acquired by another company and studies that were underway are halted, they don’t start sharing they just dispose of or lock up the data and the specimens. And so it goes. As a result, every pharmaceutical and biotech company conducting clinical trials has its own siloed set of puzzle pieces for new therapies that go un-shared and oftentimes un-connected. MORE >