The Child Mind BlogBrainstorm
Harvard/Autism Speaks Brain Bank Compromised
June 12, 2012 | Harry Kimball
It is a common lament in autism circles that research is presently inadequate and not accelerating at anywhere near the pace of, say, the prevalence of the disorder. (In just the last couple of months we've gone from 1 in 110 to 1 in 88, according to the CDC.) And so it is devastating to hear when a major resource is compromised, as appears to have happened about two weeks ago when more than 50 brains taken from deceased young people with autism were damaged in a freezer mishap, the Boston Globe reports. The specimens were part of Autism Speaks' Autism Tissue Program, housed at the Harvard Brain Tissue Resource Center.
Apparently, an administrator checked on the particular freezer unit—which also housed brains of people who had had Alzheimer's, bipolar disorder, and schizophrenia—in late May. Although the thermostat read out an acceptable temperature, and no alarms had sounded, when he entered the unit it was about as cold as your standard refrigerator—not nearly cold enough to preserve the brains. Researchers don't yet know what they can salvage and of what use it will be, but suffice it to say that the largest collection of autism brains in the world has been reduced by a third. One researcher says the loss could put research efforts back 10 years.
Even Landon Bryce, a steadfast antagonist of Autism Speaks and foe to any research that smacks of a "cure" for autism, noted the loss of the resource without editorializing. He added, darkly, that "officials have not ruled out the possibility that this was a deliberate criminal act." Though an investigation may be undertaken, some researchers in the field think an unfortunate accident is the more likely culprit. "I think this is just one of those glitches that sometimes happen,'' a brain scientist tells the Globe.
Now, this loss may turn out to be a real blow to the current state of autism research—but it also illustrates just how far we have come. Foul play or malfunctioning freezer units aside, this incident gives us insight into a coordinated research effort that teams a leading advocacy organization with a top-tier research university and federal funding. We see families affected by autism and other psychiatric and neurological disorders eager to turn their own personal tragedies into opportunities for others. It is sad that something went terribly wrong, but at least it happened in the context of things being done so right.
"The donors, they should be upset, they should realize that this shouldn't happen," another scientist tells the Globe. "But this shouldn't dissuade people from continuing to donate, because it is the most important resource that autism science has right now."