The other day, I watched a Law and Order SVU episode about a child who had a genetic defect that caused her to grow abnormally. In order to be able to better care for her, the parents forced her to take medication that permanently stunted her growth. The episode was based on real life events.
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.
Am I a going to far when I state that I see a world in the not to distant future where genetic testing for certain diseases will be mandatory and it will be a crime to conceive if you test positive for certain genetic disorders. Such a movement would most likely start in more overpopulated areas of the world with less freedoms but I do see it coming. China already has its’ “one child policy“. Is the next genetic step a “One Child No Defects” policy?
The law is now only beginning to address these issues. We can expect that it will lag behind scientific discovery. Lawmakers are not known for foresight. It is fear that generates action. Congress just recently reached an agreement clearing the way for a bill to prohibit discrimination by employers and health insurers on the basis of genetic tests. You can read about it here.
Are we moving towards a “Gattaca” society?
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