Kristina Chew on Eugenics, Fear and Pain

Kristina Chew on autism at, writing in response to her son Charlie’s new neurologist’s request for genetic testing, in a post that begins:

The new neurologist has requested that my son have some genetic testing done, specifically for the PTEN and MECP2 genes, both of which have been connected to autism (and the latter to Rett Syndrome). Which means, there’s been some evidence linking these genes to individuals on the spectrum, but nothing definitive.

Here’s my comment: I’m sure that your neurologist will have an interesting response to the question: what’s the point FOR CHARLIE of genetic testing?

On parental choice and testing: While increased parental choice, like individual choice more generally, is a value, it’s also a value that is implemented in a world that both fears disability and rushes to treat scientific knowledge, including the results from genetic and other tests, as definitive in ways in which it is not. During the heyday of eugenic sterilization and segregation, falling below 70 on an IQ test was, in many jurisdictions, a one-ticket to a life of institutionalization for many children, just as screening positive for trisomy 21 is, as Kristina points out, a one-way ticket to termination for many. Neither of the conditions that such tests diagnose, “feeblemindedness” and Down syndrome, are heritable, although one of the major justifications for the testing in both case was to prevent “degenerative breeding” and the infection of the gene pool. In both case, parents make individual decisions, ostensibly with the best intentions, and in both cases, many lives that likely would have gone significantly better take a path for the decided worse. As genetic tests and/or prenatal screens for autism-linked conditions develop, we’ll see termination rates like those for Down or higher. What those tests and screens are unlikely to reveal are levels of severity, just as they don’t for Down.
Science and medicine do improve our lives in many ways, even in such cases. What’s less clear is that they improve the lives of those most directly affected by their mixtures with individual and parental choice. The confusion typically expressed in the “had been better off not born” talk that one often hears in connection with disability shows, I think, a kind of failure of imagination and a fear of disablement.

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