Ashley Revisited… American Journal of Bioethics

Today,  12 January 2010, the American Journal of Bioethics published 30 more pages of material on the Ashley X Growth Attenuation controversy. Approximately the first half of these pages are Diekema and Fost’s “response to critics” and the remainder is comprised of nine brief peer commentaries on the  Diekema and Fost article.

Predictably, Diekema and Fost vigorously defend the “Ashley procedures.” They categorize and, in some cases, mischaracterize the many critical arguments against the procedures into 25 objections, determine that some have substance, and then provide counter-arguments to in an attempt to dismiss all 25.  In my opinion, one of the problems with this approach is that they attempt to play three roles. They present their own side of the issue, present the opposing view, and then set themselves up as objective  judges of the two arguments. Not surprisingly, they find themselves to be right and their critics to be wrong. Thankfully, the American Journal of Bioethics provided an opportunity for peer commentary. Of course, not all the commentary directly opposes the procedures, but most of it does.

It is interesting to note how some positions from the original Gunther and Diekema (2006) paper were  revised and others remained unchanged. For example, the original paper never mentioned the mastectomy that was performed on Ashley. When Dr. Diekema was challenged on how it could be left out, he indicated that it was left out because it had nothing to do with the growth attenuation procedures. In the current paper, however, they authors now argue that it was essential to do the mastectomy immediately because the estrogen used for growth attenuation was expected to result in breast enlargement, which seems to contradict the previous contention that the two events treatments were totally unrelated.

Related to this issue, Diekema and Fost suggest that my own earlier statement that Ashley would be expected to develop atypical appearance as a result of the massive doses of estrogen she was receiving was  false and had no basis. In fact, they are at least partially correct in this. It was largely false but is was based on their article that failed to disclose critical information The article in which I made that statement was written in November 2006 and based on the original Gunther and Diekema article. My statement was based on the facts as they presented them. It referred to the anticipated breast enlargement that would follow this treatment. I thought it would look strange to see a six-year-old girl with very large breasts, becuse the authors did not disclose that her breasts had been surgically removed. If they had disclosed her mastectomy, I would not have expected her to develop very large breasts.

On the other “sticking-to-our-story” side of the equation, Diekema and Fost still stick to their story that the ethical discussion was driven largely by the parents fear that would have to institutionalize Ashley if she got to big, in spite of her parents repeated statements that they never said this, it is not true, it has never been true, and they believe that it never will be true. As evidence, that the parents really did fear they would have to institutionalize her, Diekema and Fost refer readers to the parents website, but if one actually follows the link and read the parents statement, it emphatically says just the opposite:

Furthermore, we did not pursue this treatment with the intention of prolonging Ashley’s care at home. We would never turn the care of Ashley over to strangers even if she had grown tall and heavy. In the extreme, even an Ashley at 300 pounds, would still be at home and we would figure out a way to take care of her.

If in fact Dr. Diekema and others based their ethical deliberations on their misperception about the parent’s fears, any conclusion they reached based on this false foundation would be seriously flawed. While I, for one, would like to see this controversy ended, it continues for better or worse. The target article plus commentary format provided by AJOB provides a reasonable approach to having both sides heard.

A partial table of contents form the American Journal of Bioethics January 2010 includes the following relevant articles:

Target Article
Ashley Revisited: A Response to the Critics
Douglas S. Diekema; Norman Fost
Pages 30 – 44

Open Peer Commentaries
It’s Not the Growth Attenuation, It’s the Sterilization!
John Lantos
Pages 45 – 46

Growth Attenuation: Good Intentions, Bad Decision
Adrienne Asch; Anna Stubblefield
Pages 46 – 48

Putting Law in the Room (Con)
Alicia Ouellette
Pages 48 – 50

The Limits of Parental Authority?
Barry Lyons
Pages 50 – 52

Ashley’s Interests Were Not Violated Because She Does Not Have the Necessary Interests
Merle Spriggs
Pages 52 – 54

Revisiting the Relevance of the Social Model of Disability
Sara Goering
Pages 54 – 55

What Role Should Moral Intuitions Play When Dealing With Children?
D. Micah Hester
Page 56

What Took So Long? The Disability Critique Recognized
Timothy Lillie
Pages 57 – 58

Ethics or Advocacy?
Dick Sobsey
Pages 59 – 60