Marcus is a staff reporter for The Wall Street Journal and the author of the book,ore than a dozen people showed up in November, 2007, at the National Institutes of Health lab run by Christopher Austin. The parents of children dying from the lethal cholesterol metabolism disorder, Niemann-Pick disease type C , gathered alongside scientists and doctors looking for a treatment.
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.
In recent years, patients, particularly those with rare or lethal diseases, have decided they were no longer willing to leave science to the scientists. Many realized that pharmaceutical companies were not developing new treatments for their conditions, often because the market was simply too small to justify the resources and investment required to identify, test, and get novel drugs approved.
For over half a century, the focus in medical research had been on discovery launched by an individual investigator and experiments inside a lab. The system of research ethics, which evolved over decades, was set up in order to protect vulnerable people from scientists, doctors, and investigators, all groups that traditionally wield more power and more information than patients or families. There was no established system of rules when families and patients started to drive science.
Tinubu is a drug baron, so your company can stoop this low to name a drug convict as influential, new low for time magazine, I guess el chapo should make the list, stupid!!! TIMES HAS LOST CREDIBILITY AND COMPROMISED, HOW MUCH DID TINUBU PAY YOU
“The only real failure in life is not to be true to the best one knows.'