Yesterday President Barack Obama put his money – and ours – where his mouth is. He went beyond the obligatory declaration of World Autism Awareness Day and announced a 1 billion dollar research project called the BRAIN Initiative, which stands for Brain Research through Advancing Innovative Neurotechnologies. It’s brain mapping, and it’s a good idea. He said, “As humans, we can identify galaxies light years away, we can study particles smaller than an atom, but we still haven’t unlocked the mystery of the three pounds of matter that sits between our ears….So, as a result, we’re still unable to cure diseases like Alzheimer’s or autism, or fully reverse the effects of a stroke.”
I like this for many reasons, and particularly because it includes lots of hard science but includes funding for bioethical considerations. I am sick to death of the epidemiological studies like the recent one that postulated that women who were abused in their youth are more likely to bear a child with autism (it was funded by the Department of Defense – what’s up with that?). Without dwelling on that topic too much, I’d like to point out that study like that which throws out risks factors for a disorder for which there is no known scientific cause (beyond heredity, which has been established to some extent) is not only unhelpful, it is cruel. What pregnant woman with a painful past will benefit from hearing that the abuse she suffered as a child will be visited upon her child in the form of a developmental disorder?
But back to the BRAIN. Mapping brains raises significant ethical issues and raises the ugly specter of eugenics. Good brains versus less good brains – and who decides what’s good? Who decides what needs fixing? The autism community is so huge and the spectrum covers such a wide range of functioning that it’s impossible to justify any effort to fully eradicate it like, say, polio. There’s a big difference between understanding our quirks and trying to eliminate them. It reminds me of Botox – I am truly baffled that anyone would want to smooth out their crow’s feet, a necessary and beautiful byproduct of smiling. To me, the BRAIN work should develop a scientific understanding that allows us to build a world in which autistic people are empowered, assisted, and valued – not one in which they are genetically weeded out. For some, the brain map will mean finding a way to give them language, for others, it means finding a way to give them work. For all of us, it means hope.
For more information on the BRAIN initiative, check out the White House fact sheet. If it looks good to you, you might want to weigh in with your congressional representatives (House, Senate) and encourage them to vote to fund it.