Keeping good records - A is for Aster
1 hour ago in The Phytophactor
"We all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”"Parking their egos" outside would be necessary for the diverse and large studies required to gain insight into true AD biomarkers.
“The problem in the field was that you had many different scientists in many different universities doing their own research with their own patients and with their own methods,” said Dr. Michael W. Weiner of the San Francisco Department of Veterans Affairs, who directs ADNI. “Different people using different methods on different subjects in different places were getting different results, which is not surprising. What was needed was to get everyone together and to get a common data set.”The problem is of course is that it can be tricky as hell to distinguish true biomarkers from spurious ones (the old problem of distinguishing correlation from causation). It would take some time to zero in on those biomarkers that truly signal the onset of the disease. But this bit of news is gladdening for two reasons; firstly because it indicates that people are perhaps moving away from the obsession with targeting amyloid (which nonetheless continues to be a fascinating entity), and more importantly because it indicates that there are still people willing to park their egos outside the door and publicly collaborate to address a very complex medical challenge. Hopefully this endeavor should provide inspiration for tackling other diseases.
But that would require a huge effort. No company could do it alone, and neither could individual researchers. The project would require 800 subjects, some with normal memories, some with memory impairment, some with Alzheimer’s, who would be tested for possible biomarkers and followed for years to see whether these markers signaled the disease’s progression.
Sixty-five years ago, after learning that a friend who was reported missing after the bombing of Hiroshima had turned up in a hospital there, my mother put together a meager care package and set out from our home in Shikoku to pay a visit. When she returned, she shared her friend’s description of that morning in August 1945.
Moments before the atomic bomb was dropped, my mother’s friend happened to seek shelter from the bright summer sunlight in the shadow of a sturdy brick wall, and she watched from there as two children who had been playing out in the open were vaporized in the blink of an eye. “I just felt outraged,” she told my mother, weeping.
Even though I didn’t fully grasp its import at the time, I feel that hearing that horrifying story (along with the word outrage, which put down deep, abiding roots in my heart) is what impelled me to become a writer. But I’m haunted by the thought that, ultimately, I was never able to write a “big novel” about the people who experienced the bombings and the subsequent 50-plus years of the nuclear age that I’ve lived through — and I think now that writing that novel is the only thing I ever really wanted to do.
In Edward W. Said’s last book, “On Late Style,” he gives many examples of artists (composers, musicians, poets, writers) whose work as they grew older contained a peculiar sort of concentrated tension, hovering on the brink of catastrophe, and who, in their later years, used that tension to express their epochs, their worlds, their societies, themselves.
As for me, on the day last week when I learned about the revival of the nuclear-umbrella ideology, I looked at myself sitting alone in my study in the dead of night . . . . . . and what I saw was an aged, powerless human being, motionless under the weight of this great outrage, just feeling the peculiarly concentrated tension, as if doing so (while doing nothing) were an art form in itself. And for that old Japanese man, perhaps sitting there alone in silent protest will be his own “late work.”