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.