Doctored is the recently published book by Charles Piller, an investigative reporter for Science Magazine. Piller goes through the history of early diagnosis and research with Alzheimer’s disease, what the consensus has been regarding most likely causes and therefore best targets for treatments, and deep dives into some of the major players in the field of Alzheimer’s research.
Aptly subtitled Fraud, Arrogance, and Tragedy in the Quest to Cure Alzheimer’s, Piller recounts the exhaustive work done by a whistleblower to bring attention to questionable and suspicious published results.
Fraud
The unraveling of what is known as the Amyloid Hypothesis started with investigative work done by a whistleblower working on dementia research. While the whistleblower remained anonymous (aside from the book’s author and select others) for some time for fear of blowback into his own research, eventually as the work progressed and grew to include additional researchers, he ultimately had to reveal his identity.
The fraud that was revealed encompassed multiple researchers and labs, with no connection to one another. The author describes that with the exposure of one suspected target of fraudulent data, the efforts by this whistleblower then lead to many other instances of falsified data, that have taken place over decades and have steered the direction of Alzheimer’s research globally.
It was fascinating to see how many researchers were caught up in fraud, independent of the other researchers in the same field, who were themselves perpetrating fraud. In the midst of exposing fraudulent data, the whistleblower himself had to expose his own postgraduate PI for fraudulent data that had been published years before. It. was heartbreaking to read that so many people independently made the choice to repeatedly publish fraudulent research results.
Arrogance
One of the things that the author showed was the arrogance among researchers in the Alzheimer’s field that seemed to hold themselves to this untouchable status, thinking their theory on the root causes of Alzheimer’s Disease was the only legitimate line of research that should be done. This concept that exists in science that data should be questioned and various theories run to ground, seemed to be discouraged and actively suppressed in the field of Alzheimer’s research. Piller described several instances where potential research was unfunded, or actively snubbed in favor of continual research that supported the accepted amyloid hypothesis. This core set of researchers setting the pace for ongoing and future Alzheimer’s research has been referred to as the Amyloid Mafia, a nod to the stranglehold the amyloid hypothesis and its proponents have on the field of Alzheimer’s research.
Tragedy
The author, throughout the book and in his summary, really drives home the scope of tragedy that is involved with this fraud. Over the course of decades, research proposals and researchers were denied opportunity to explore other avenues of possible causes in the field of Alzheimer’s research. This is decades lost to exploring alternative theories. Millions of dollars in research money have been awarded to labs and researchers who were actively publishing fraudulent data, and furthering a misguided theory in Alzheimer’s research. Good scientists have made bad decisions, and have lost their careers and their reputations.
Decades of research being focused and funneled toward a particular narrative in favor of novel ideas, have led to drugs designed based on faulty research. Years of drug trials and patients who have had to forgo other treatment options to take part in these trials, hoping for a cure or at least clawing back some of themselves, all based on this fraudulent work.
This book was tragic not only for the lost time, money, and effort into the research with Alzheimer’s, the lives lost in this time and lives that will be lost due to treatment options that are ineffective or have negative consequences. The bigger tragedy is the distrust of science and medical research that comes from a huge expose in this field. People want to trust science, scientists, and the field of medical research and when a story like this happens, it leaves people with their faith shaken.
The author did a wonderful job going through the science, the research and researchers in this field, the tangible effects of this massive fraud occurrence in Alzheimer’s research, the loss of hope for many Alzheimer’s patients and their families who have waited years for treatment and a cure. I found myself vacillating between anger at the researchers who perpetrated the fraud, heartbreak for the families who have placed their hope in these drug trials, and hopelessness at the knowledge that this will further erode the trust the public has for science and research. The damage done by this investigation will take years to recover from, in the field of Alzheimer’s research and beyond.
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