A journal has retracted a paper on a controversial course of treatment used to stunt the growth of disabled children, at the request of the human research ethics committee at the University of Waikato in New Zealand.
The paper described the so-called Ashley Treatment — explored last week in the New York Times — in which disabled children receive hormones and procedures to keep them small and diminish the effects of puberty, making it easier for them to be cared for. The retracted paper analyzed the use of the treatment in a girl named Charley who was born in New Zealand with a brain injury, whose case has attracted the attention of The Washington Post and People magazine, among other outlets.
The paper analyzed Charley’s case, and did not involve any clinical subjects. But the retraction note suggests that the ethics of publishing this paper weren’t fully worked out:
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:
Hamilton, Carol. 2015. “Growth Attenuation and Young People with Profound Disabilities – Why We Need To Talk about Charley.” Disability & Society 30 (7): 1055–1070, http://dx.doi.org/10.1080/09687599.2015.1069732. Version of Record published online 18 Aug 2015.The Editors and publishers of the journal, Taylor & Francis, note we received, peer-reviewed, accepted, and published the article in good faith.
The paper has not been cited, according to Thomson Reuters Web of Science.
The sole author on the paper is Carol Hamilton, a disability researcher at the University of Waikato.
The use of this treatment, the abstract explains,
is intimately bound up in ideas about worthiness of life related to the ability to act as an autonomous agent within social structures. Questions this case raises about ethical decision-making and future physical and social requirements for profoundly disabled young people in the future are posed.
In the paper, Hamilton explains that she wrote an article on AT “initially as a means of personal sense-making:”
I sent the article in for peer review and it was subsequently rejected. My central idea – that the AT had been carried out in large part because Ashley had been judged as incapable of performing the social meanings and identities consistent with the requirements of an adult female body in Euro-western society – had not found favour. In some respects I was relieved. It had been hard to prove this point beyond doubt.
The paper notes that Charley’s parents sought approval from a New Zealand ethics committee for the procedure. When they were turned down, they flew to South Korea where a pediatric endocrinologist started her on hormone treatments. Later, Charley had a hysterectomy in New Zealand:
What has happened to Charley and other young profoundly disabled young people who have been through growth attenuation treatment should require ethicists, academics, clinicians, parents and general community members to rethink our relationship with our current ideas about what is ethically possible in a world where hitherto clear distinctions between what is acceptable and what is unacceptable have become diffused (Shildrick 2002).
We’ve reached out to Hamilton, to the University of Waikato, and to the journal for more information, and will update this post with anything else we learn.
Update: 6/21/16 11:08 a.m. eastern:
Charley’s mom, Jen Hooper, told us over Skype that she found the paper while doing a routine Google search, and filed a complaint about it with the university because she believed it was inaccurate:
I was very concerned about what was written…[my relationship to Charley was] extrapolated to the point of being fictional…It was stated as though, she’d come up with her own conclusions of things which were way off base, and she stated them as though they were fact. For example…the house where we lived backed onto a high school. When the children were all in class, I would leave Charley in her crib — this was back when she was screaming 23 hours a day. Screaming like you were killing her. And there was not a damn thing that I could do about it. So I put her in her crib at times when the kids had gone back into class, and I would climb over the back fence, I’d walk over to the center of the cricket pitch basically. And sit in the center of the cricket pitch and I’d look back towards the house…I could see if anyone approached the house, I could see if the house was burning down, I could see that she was safe. But it’s the only place I could go where I couldn’t hear her screaming…What Carole Hamilton wrote was — and I’m going to paraphrase…she put it, ‘this was Jen’s way of trying to escape the guilt, shame and disgust that she felt over her daughter’s disabilities…It’s not even close to the truth. I don’t feel any shame, because I did nothing wrong. I’m not embarrassed about Charley, that’s why I take her out in public all the time. And I’m certainly not disgusted…The whole article was full of all of this.
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There’s something odd about this. This was in effect a review paper, an interpretative analysis of information that was already in the public domain. No experiments were carried out. It’s hard to see how such a paper needs approval from an ethics committee.