Citizen Scientists Are Driving Medical Research. Now They Need A Constitution

More than a dozen people showed up in November, 2007, at the National Institutes of Health (NIH) lab run by Christopher Austin. The parents of children dying from the lethal cholesterol metabolism disorder, Niemann-Pick disease type C (NPC), gathered alongside scientists and doctors looking for a treatment. They wanted to work together to find effective drugs and get them into clinical trials within a few years, accelerating the typical timeline for drug development. They hoped to find a compound that might extend the lives of children with the rare disease, who typically died by age 19. In terms of the science, the meeting was a success. Dr. Austin’s lab had built a robotics system that rivaled ones found at pharmaceutical companies, enabling the rapid screening of drug libraries. By the end of the meeting, he agreed to use the robots to test thousands of different drugs on skin cells that one of the doctors collected during a study of children with NPC disease. Once they generated a list of promising drugs that got the cholesterol stuck in the cells moving again, the parents and researchers would all meet together to winnow down the candidates and figure out which ones to push forward. [time-brightcove not-tgx=”true”] But the partnership established that day was not only focused on advancing the science. Members of the collaboration had also embarked on a remarkable social experiment, one with implications extending far beyond NPC disease. They were testin...
Source: TIME: Health - Category: Consumer Health News Authors: Tags: Uncategorized freelance health Source Type: news