I was watching Law and Order SVU last night and one of the sub-plots was about a couple who had a genetic defect which caused her to grow abnormally. The family was giving her medication to permanently stunt her growth. Detective Benson had a huge problem with the ethics of such treatment. The episode also included an interaction will a girl who had the treatment done to her and had grown up and was very happy and normal other than her small stature. Below is the real life case this is based on and the article I wrote when it happened….
ORIGINAL POST - JANUARY 10, 2007:
(CNN)”Ashley’s parents have stunted her growth to keep her at 4 feet 5 inches. Their daughter has severe physical and mental disabilities. They say the treatment is for her comfort and to make it easier to carry her and include her in family activities.
The parents don’t want their names used or to speak about the treatment they chose beyond the explanation posted on their website. But the case of their daughter has created a medical and ethical controversy.
The parents don’t want their names used or to speak about the treatment they chose beyond the explanation posted on their website. But the case of their daughter has created a medical and ethical controversy.
“Ashley is a little girl who is unable to talk and unable to walk and interacts with individuals like a baby would,” says Dr. Douglas Diekema, a pediatrician and ethicist at the Children’s Hospital and Regional Medical Center in Seattle, which has worked with the family. “She can’t do anything for herself. She really needs help feeding and dressing and moving about. She’s completely dependent on other people for care.”
So when endocrinologist Daniel Gunther, also a doctor at the Seattle hospital, suggested stunting their daughter’s growth, the family did research, then asked the hospital to help.
Diekema, a member of the ethics committee that met, agreed that the treatment was the best thing for the girl.
“Ashley’s life is her family,” says Diekema. Like a baby, she has a very small world, and it’s “all about her parents and her siblings. It’s very important to the parents to provide as personal a level of care as they can. Dad would much prefer to pick her up in the morning out of bed and give her a hug and carry her to the chair and carry her from the chair to the car for as long as he can do that physically.”
The treatment was highly unusual. For several years, until recently, Ashley was given massive doses of estrogen. That stopped her from growing beyond her child’s size. And doctors removed her uterus and breast tissue.
The parents now refer to this as “Ashley’s Treatment” and say it could benefit other children like Ashley.
Diekema, the hospital ethicist, thinks it would be used only in the rarest of cases.
“Would it be inappropriate with somebody who had a capacity to develop at a greater level? Very possibly. I would never advocate this for a child with Down syndrome, for example,” Diekema says.
Many parents of severely disabled children worry about how to care for their children as they grow older and bigger. These families rely on in-home aides and mechanical lifts. But those solutions are not perfect.
“This is a very common problem,” says Dr. Jeffrey Brosco, a pediatrician and ethicist at the University of Miami. “Just last week, I was mourning with a family because their 19-year-old son is over 200 pounds.” His behavior is more aggressive, so the parents have moved him into a group home. They were unable to care for him at home.
Many parents of children with severe disabilities face this dilemma: What do they do when they’re not physically able to care for the child? Still, Brosco is worried about the solution in Ashley’s case. He’s written about it in the medical journal Archives of Pediatrics and Adolescent Medicine, responding to an article by Ashley’s doctors. He says it’s not clear how well Ashley’s treatment will work, whether it really will keep her small and comfortable. And there might be side effects, like seizures, for a girl who already has severe disabilities.
He’s worried about doing odd medical treatments on disabled people — a group with a history of forced sterilizations and euthanasia.
But Brosco is particularly worried about all the focus on this one case in Seattle .
“I’m concerned that the attention being paid to Ashley’s case might divert our attention from the larger social and political issue, which is that we are not doing a good job in helping [families] keep their adult children at home,” he says.
Brosco says what families really need are in-home aides, technology to help them with chores such as lifting and other support. As compelling as Ashley’s case may be, it has little to do with the everyday struggles of families who care for children with severe disabilities.”
http://www.cnn.com/2007/HEALTH/conditions/01/04/ashley.treatment.ap/index.html
HERE IS MY ARTICLE:
I will first state that I am not a parent of a handicapped child or any children for that matter. I am neither a scientist nor a physician. I had never even heard of this use of science/medicine for this purpose before this article. I could research the hell out of this and write a thesis but I will give a shorter view of how I feel.
I will never ever second-guess the decisions of those whose shoes I will probably never walk in where they are making decisions they deem in the best interest of their children. That is what parents do. That is what they are supposed to do. I won’t criticize an individual decision. However, I will second-guess the overall ethical use of the science and those who made this alternative available to the parents. I am fairly certain it didn’t come to the parents in a dream.
What is the intended purpose of the medicine/science versus how it was used here?
It is absolutely a good thing that medicine and science often lead to other uses for that same medicine and science. Without knowing more about this particular medicine (and it could be a completely bogus analogy), I will use stem cell research. All religious objections aside, the main objections are not to the intended use of the science.
I think most agree (except those with religious objections) that the idea of using stem cells to cure otherwise incurable disease is the intended use and is beneficial.
The objections are as to individual, personal uses that are not within the scientific realm of the intended uses - uses which are inflicted on specific individuals where the greater good has not really been hashed out. That is the issue I have here.
Was this a decision made solely by the parents in their best interests and not the child’s? I don’t know. They obviously claim differently and since there was no legal challenge, that is all that counts. Legally the standards are almost always what is in the child’s best interest. I do not fault the parents for acting in their own best interests. Again, walk in their shoes. I will also believe it’s true that what was done may have in fact been the child’s best interest in this particular situation. That is not the point.
Is what was done to this child the intended use of the science pushed on her without her consent? She is someone’s child but she is still a human being.
Some may argue that this really was not genetic engineering, but a combination of accepted types of surgery and medicine. That is form over substance. Accepted for what purpose? The genetically predestined course of this child’s life was altered through science. That is the essence of genetic engineering. I take issue when non-medically or scientifically accepted science for a particular purpose is pushed on an individual or a group of individuals solely to make the life of another group easier.
I could make some historical analogies here but I won’t. I will simply conclude by stating that this is the essence of selective genetic engineering which scares me a little - keeping the weak weak or getting rid of them in order to make the strong stronger and their lives easier, at least in their minds.
©2007 Brian Cuban
