Brian Cuban takes a provocative look at the issue of genetically engineering children.
In January of 2007, the parents of a girl named Ashley had a surgery entitled “growth attenuation” performed on her to permanently stunt her growth to keep her at 4 feet 5 inches. This treatment also includes sterilizing Ashely. Ashley has severe physical and mental disabilities. The parents stated the treatment was for her comfort and to make it easier to carry her and include her in family activities. Ashely was of course much to young to consent to or even understand what was being done to her.
The case created a huge medical and ethical controversy. The hospital and parents defended their decision to to do the surgery while others in the medical community and general public were outraged. You can read the story and see photos of Ashley here
The hospital and the doctors who performed the surgery were roundly criticized for performing the procedure. The Seattle hospital performing the surgery was later found to have broken state law when doctors performed a hysterectomy on Ashley as part of the treatment. Under Washington law minors can not be sterilized without court order.
At what point does the attempt to control genetics become perverse and who gets the say in how much is too much? In Ashley case, there was no guardian ad litum appointed. There was no independent voice speaking for Ashley. Do we need better legal checks and balances before we permanently alter the life course of those who can not speak for themselves. I am not passing judgment on what went down. I do not have children and don’t know what I would do. You can get her parent’s perspective by viewing their website.
Where do we draw the line between the best interest of the child and the best interest of the parents.
This is just the tip of the genetics sword. What if genetic testing during pregnancy told Ashley’s parents that Ashely would have these problems? It is a given that in my lifetime, your lifetime or your child’s lifetime, genetic testing will advance to the point where many deadly and life changing maladies will be able to be detected prior to birth. Genetic engineering and testing is BIG business.
Many might also recall the controversy that erupted when Jim Lampley and Bree Walker decided to have a child. It was argued that Bree Walker should not attempt to conceive out of concern that her child could inherit the genetic hand and foot anomaly called ectrodactyly.
Needless to say, there has to be guidelines in place to avoid people taking social and personal eugenics one step too far, as well as to protect the best interests of the child. However, government involvement in this area needs to be limited to only advance those compelling interests and not be used to otherwise limit our procreative freedoms.
The inherent problem with any legislation in this area is where to draw the line. Should the government become involved in issues regarding what characteristics are “acceptable” in an offspring? Should we regulate using termination procedures to prevent children being born with certain conditions? If so, which ones? Would a termination be appropriate in a situation where the child has Tay-Sachs but impermissible if the condition is Downs Syndrome? Bob Williamson, director of the Murdoch Institute for Research into Birth Defects in Melbourne, and Professor of Medical Genetics University of Melbourne illustrated the slippery slope we are heading down when he said:
“We have to realize that most people in my experience have fairly clear views on what level of disability appears to them to be consistent with a worthwhile outcome to themselves. I am actually irritated if people say, everyone thinks that condition is so bad that we should have prenatal diagnosis and termination of pregnancy but condition y (e.g., cleft palate) isn’t bad enough. The truth is you can’t say that in terms of a condition, you can only say it in terms of a woman, of her family, her perceptions, her social context, her economic context and everything else. For some people cleft palate will be something they will be at ease with, but for other people it will not be. The same is true for Down syndrome. We must avoid categorizing diseases as severe or not severe. This can only be seen in the context of the overall holistic situation of a family and individuals. ”
What do you think?
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