An article entitled “The Gene Hackers” appeared in the November 16, 2015 issue of The New Yorker. It attracted my attention because it touches on neuroscience and other topics that interest me. I always worry when I read an article like this that autism will be mentioned in an unfavorable light. I didn’t have to wait too long to have my fears confirmed. On the second page of this 9-page article (3 of 17 in the pdf version), the word appears.
A few well-known disorders, such as Huntington’s disease and sickle-cell anemia, are caused by defects in a single gene. But most devastating illnesses, among them diabetes, autism, Alzheimer’s, and cancer, are almost always the result of a constantly shifting dynamic that can include hundreds of genes.
Ouch! Autism is not a “devastating illness” — in fact, it’s not an illness at all. Why does this mythology persist? (That is a rhetorical question, since many reasons are well known.)
And the word appears again several times later in the article.
The lab employs a similar approach to studying autism. Recent experiments suggest that certain psychiatric conditions can be caused by just a few malfunctioning neurons out of the trillions in every brain. Studying the way neurons function within the brain is difficult. But by re-creating, in the lab, genetic mutations that others have linked to autism and schizophrenia Zhang’s team has been able to investigate faulty neurons that may play a role in those conditions.
“Genetic mutations” have been linked to blue eyes, red hair, and lefthandedness, but to my knowledge people are no longer considering these conditions to have been caused by “faulty neurons.” It is true that until very recently, being left-handed was considered the work of the Devil, but I would hope we are beyond that by now.
Autism and schizophrenia are examples of what we call neurodivergence. Although these two conditions may appear similar to outside observers, they are really quite different. Schizophrenia is a degenerative condition that seldom shows up in childhood. Autism, on the other hand, is a stable personality type that is evident from the beginning of life.
Last year, the National Science Foundation presented Zhang with its most prestigious award, saying that his fundamental research “moves us in the direction” of eliminating schizophrenia, autism, and other brain disorders.
Again, “ouch!” or “oy!” or any number of other exclamations. Autism is not a brain disorder. And, “eliminating autism”? I don’t want to be eliminated, thank you very much. I’m sure my brain could use some training to do certain things better, but who couldn’t say the same thing?
Although I don’t recall seeing the word “eugenics” in the article, there is mention of a nightmare had by one of the researchers profiled. She dreamed of meeting Hitler, and said:
I woke up in a cold sweat. And that dream has haunted me from that day. Because suppose somebody like Hitler had access to this—we can only imagine the kind of horrible uses he could put it to.”
referring to the technology that could come out of the research mentioned in the award.
The good news is that the article points out that such uses are years away, and the ethical issues need to be studied. Let’s hope that by the time this technology becomes reality that science (and society) will have a more positive view of the value of differences.
The author concludes:
CRISPR technology offers a new outlet for the inchoate fear of tinkering with the fundamentals of life. There are many valid reasons to worry. But it is essential to assess both the risks and the benefits of any new technology. Most people would consider it dangerous to fundamentally alter the human gene pool to treat a disease like AIDS if we could cure it with medicine or a vaccine. But risks always depend on the potential result. If CRISPR helps unravel the mysteries of autism, contributes to a cure for a form of cancer, or makes it easier for farmers to grow more nutritious food while reducing environmental damage, the fears, like the many others before them, will almost certainly disappear.
This is a much gentler view of autism. Understanding is a good thing. Elimination, not so much.