For those unfamiliar with the Hastings Center, it is a fascinating center for the study of bioethics. They produce first rate, serious and sober scholarship. I was lucky enough to be a visiting scholar at the Hastings Center earlier this year and found the experience fabulously rewarding. For better or worse, the Hasting Center does not often make the mainstream news. I suspect the Hastings Center is content to be a purely scholarly institution. I admire this institutional effort in this era of news bites especially since some institutions and universities are all too eager to get their names in print for dubious reasons (think Princeton University and the philosopher Peter Singer). Unfortunately for the Hastings Center the conclusions of the Seattle Working Group are the subject to superficial news bites. What do these news bites report? Simply put, growth attenuation is “morally permissible’. Based on my reading of the Seattle Working Group this is not what they have concluded. This is a big problem in terms of disability rights at multiple levels. Since the end of November several news outlets have repeated that growth attenuation is “morally permissible”. This is an over simplification if not gross distortion of the facts. And I am sure not only am I unhappy but so too are the members of the Seattle Working Group.
The twenty person Seattle working group (curiously with only 19 names listed in the Hastings Center Report) “reached a moral compromise rather than consensus”. Some members of the group are dissatisfied, even distressed, by the paper produced. No such “morally permissible” conclusion was reached. The “compromise position” agreed upon was as follows:
“Growth attenuation can be an ethically acceptable decision because the benefits and risks are similar to those associated with other decisions that parents make for their profoundly disabled children and about which reasonable people disagree.”
The Seattle group maintains that just because a parent asks for growth attenuation does not mean such a course of treatment should automatically be permitted. Safe guards must be put in place that include “eligibility criteria, a thorough decision-making process and involvement of ethics consultants or committees”. This is fine but does not nearly go far enough for me. I have no faith in ethics committees nor in large institutions where decision making strategies make little sense to outsiders. Moreover, I would argue any child subjected to growth attenuation requires independent legal representation in the form of a guardian ad litem. I am by no means a proponent of court intervention however given the extreme nature of growth attenuation extreme measure of protection must be put in place.
There is much to dissect in the Hastings Center Report. Sadly, the most important point raised has been ignored. According to the Seattle Working Group, growth attenuation highlights the unique needs and problems that children and adults with physical and cognitive disabilities encounter. These needs and problems are routinely ignored and in most states support for such individuals is grossly inadequate. Thus the Seattle Working Group concluded, “it is clear that these families need greater social support. To date, there has been insufficient public discussion about how to provide that support and improve the lives of people with profound disabilities. Further, the issues facing this population have not been the primary focus for many health care professionals.”
The above quote gets to the heart of the issue. Why are people with disabilities socially isolated and struggle mightily to access basic health care? Why are people with cognitive disabilities in particular stigmatized inside and outside of the medical community? I have little doubt that my struggles with equal rights and accessing the health care system as an adult with a profound physical disability pale in comparison to those with a cognitive and physical disability. This is an issue worthy of public debate and I applaud the Seattle Working Group for highlighting this point. In contrast, I decry the misleading headlines that confuse rather than clarify the central issues involved in growth attenuation. I have been reading such misleading headlines for decades and on bad days wonder if people will ever really care about the unique issues all people with disabilities arte forced to confront. Will resources, social and practical, ever be deemed important enough to support the lives of people with disabilities? This is a subject worthy of delving into in not only disability rights, bioethics, but in investigative journalism. For instance I have not read any detailed story that questions exactly why some parents are driven to consider growth attenuation. That is a story that outlines just how hard it is to find adequate resources and health care professionals willing to help. Sure I have read the Ashley X parents blog but they are far from the norm. Their goal seemed double sided from the start—help their daughter and sell growth attenuation. Given this, I wish that people would read what the Seattle Working Group has to say on the matter. It is the first even handed scholarly treatment of the pros and cons of growth attenuation. I hardly agree with all that they have written but I do respect the balance they maintained. I only wish the important sober and serious conclusions were discussed in the mainstream media. Now that is a discussion I would love to partake in.