Questions about the growth attenuation working group article in HCR Part 3

The WG article makes the divide between proponents and opponents look far smaller than reality to make the controversy itself look far less grave than it actually is.

It notes at the beginning of the article that the group members share the views about profound disabilities as below.

1)    They are concerned that people with profound disabilities are devalued.

2)    They believe more investment in medical and social services is priority.

3)    They think societal attitudes toward people with profound disabilities should be improved.

4)    They also think that parents of profoundly disabled children should be “afforded respect and considerable deference in making the complex and difficult decisions unique to their child’s care.”

They can’t share the first three views, because opponents’ point is that the rationale of growth attenuation is incompatible with these concerns. Its rationale discriminates and devalues children with profound disabilities. Its generalization would prioritize medical fix and wouldn’t help in realizing more social care. More importantly, it would be “medicalization.” It would help deteriorate societal attitudes and do people with profound disabilities social harm, as Dr. Quellette so eloquently pointed out in her 2008 paper,  by labeling them as someone it is OK to fix in a way that would be immoral if done to others. The proponents of the intervention in the WG can’t share these views with its opponents. If they think they do, they must totally miss the point, unless the authors just say they share these views in order to imply, “OK. We all agree to these. So case closed about them.” The case can’t be closed here without talking about human rights and discrimination. These views are about human rights and discrimination, the critics have been pointing out.

Respect and deference for parents is totally irrelevant, because it is not about supporting parents in difficult decision making here. It is about the limit of parental right in decision making about an extreme, novel, untested, highly invasive and irreversible medical intervention for their disabled children.

On the other hand, the article writes the differences within the group simply refer to attitudes toward our bodies or our children’s bodies. Just a matter of whether we should accept our bodies as they are or accept shaping our bodies if there is benefit.

Sharing so much and differing in so little, they should easily “reach for a middle ground” and “compromise.” After all, “This is one of many parental decisions for which a decision in either direction may be ethically justified,” goes the article.

No, it’s not. To see why this is not one of those parental decisions for which a decision in either direction may be ethically justified, you can turn to the WPAS investigative report. It writes, “these procedures (breast bud removal and growth attenuation), along with the hysterectomy affect an individual’s common law right to be free from bodily invasion.” The WPAS attorneys (this must include Mr. Carlson who was a member of the WG) think “a court would probably find that, like sterilization, the removal of a child’s breast buds and administration of high doses of hormones for the purpose of implementing the “Ashley Treatment” would be considered by a court to pose a similarly significant imposition on the child’s liberty and privacy rights.”

You can also turn to Washington University Informed Consent Manual (2001-2004) attached to the report, which states, “The intent of this limitation is to require court approval before a guardian or other legally authorized surrogate may consent to highly intrusive, irreversible medical treatment that may seriously affect the person’s bodily integrity.”

Or checking the newsletter analysis of growth attenuation by a legal company in Australia will also help. It says, “growth attenuation therapy is permanent and irreversible, with arguable therapeutic benefit for the child, and there is a likelihood of significant adverse consequences for the child if the wrong decision is made.” It advises in conclusion “doctors would be well-advised to insist upon court authorisation before agreeing to provide growth attenuation therapy.”

The WG article repeats the statement with subtly different expressions that the decision of growth attenuation has no serious impact and is no different from other medical decisions parents of profoundly disabled children always make. The authors repeatedly blush off opponents’ concerns based on this view. But they can’t do this, because it is the proponents’ view represented by the statement that  is challenged by critics. Using the statement as a ground for rebuttal is tautological and it is not valid argument.

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