the cost of publishing

This afternoon I went to the Bioethics Grand Rounds at the Medical College of Wisconsin where the speaker was Dr. Doug Diekema of the University of Washington. Dr. Diekema was the ethics consultant on the "Ashley Case." In 2004, the parents of a severely disabled 6.5 year old girl approached doctors to slow Ashley's growth so that they could continue to care for her at home. The ethics committee at Children's Hospital and Regional Medical Center in Seattle was convened and the 20 member panel ultimately decided it was in Ashley's best interest to agree with the parents request. Here is the parents story http://ashleytreatment.spaces.live.com/blog/.

What struck me about Dr. Diekema's recounting of this story was the fact that there was no media attention, no pubic outcry, until after the story was published in the journal Archives of Pediatric and Adolescent Medicine. This was an important case. It needed to be shared with the medical community. So much of medical and scientific research is about collaboration and learning from what others have tried. But in doing so, the doctors opened themselves up to so much criticism and misunderstanding from the mass media, from disability advocacy groups, and from other doctors. When the story was picked up by the media, two years after Ashley's treatment, it absolutely changed the lives of the doctors involved, the parents, and the institution where this all took place. Sometimes medical research carries a very personal cost, even for the researchers.