Ethics and the “Ashley Treatment” | Vol. 3 / No. 22.3

Holding baby’s hands forever? | Photo: fruity monkey, CC BY 2.0

A new post over at Retraction Watch has followed hard on the heels of a New York Times article about something called the “Ashley Treatment.” While about the treatment, this post doesn’t give any answers — and maybe that’s for the best.

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The “Ashley Treatment” is the name given to a series of medical procedures designed to arrest the growth of profoundly intellectually disabled children. And as it should be, it’s highly controversial. Named for a patient in Seattle dubbed “Ashley X,” the idea is to keep children who will never progress mentally anywhere near to adulthood from physically approaching adulthood either, in order to make their care easier and, according to proponents, their lives more pleasant. But the procedures, as you might expect, are not minor. Large doses of estrogen prematurely close their growth plates, stopping their skeletal growth; in both male and female patients the breast buds are removed (as the estrogen can cause breast tissue to develop even in the male patients); and in the female patients a hysterectomy is also performed, to prevent menstruation. This is an irreversible intervention.

At first blush, it seems like a smart choice — humans who will never approach adulthood and require the kind of care parents give to children might be best served by remaining children in stature. They can be more easily lifted, held, cleaned, and fed, and they stand a much lower likelihood of getting things like bed sores (which, despite their mild-sounding name, can prove fatal). But this is also a question of removing the potential for future autonomy. We can’t know, not with absolute certainty, how much a person with a severe mental deficit can perceive or, for that matter, will be able to perceive later in life. The right choice today may not be the right choice in five years, but the choice must be made now.

Retraction Watch has reported the retraction of an article from the journal Disability and Society about one specific patient, a New Zealand girl going by the name “Charley,” and how she underwent the hormone treatment in South Korea after a New Zealand-based medical ethics committee denied her parents’ request for the procedure to be done there. Later, she was given a hysterectomy back in New Zealand. The article seems to deal with the ethics of the procedures head-on, and its retraction is curious, if only for its brevity. The retraction simply reads as follows:

The Editor and Taylor & Francis, publishers of Disability & Society, are retracting the following article at the request of the University of Waikato Human Research Ethics Committee.

The author is a disability researcher at the University of Waikato, and had nothing to do with “Charley” except to write about her, so it’s not likely to be any gross violation of ethics. More likely, to my mind, there is a feeling that even talking about the Ashley Treatment is an ethical minefield and makes people uncomfortable. What if, I’m sure some people wonder, parents find out about this procedure from their journal and decide to have it done?

What if someone reads this post?

I can’t tell you whether it’s a procedure that should be done, should be legal, should be banned. Certainly it should never be used on any but those with the most profound damage to their brains, without any even potential hope of developing into adults — but how does one define those terms? I’m not qualified, and I’m honestly not sure anyone is.

But I do know one thing: we need to talk about the Ashley Treatment. That, I can say for sure, is a moral imperative. Because until medical experts and ethicists get together and seriously discuss this, there really won’t be anyone qualified to make those decisions, and some parents will still have the procedures done in that informational vacuum. So we need to talk about it — not to advocate for or against it, so much as to figure out whether we even should.

For a more qualified (and very in-depth discussion) you can read this article by Robert Newsome at Psychology Today, as well as this article by Genevieve Field over at the New York Times.

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Richard Ford Burley is a human, writer, and doctoral candidate at Boston College, as well as an editor at Ledger, the first academic journal devoted to Bitcoin and other cryptocurrencies. In his spare time he writes about science, skepticism, feminism, and futurism here at This Week In Tomorrow.

 

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