Charlie Gard Dies, Leaving a Legacy of Thorny Ethics Questions
By DAN BILEFSKY, JULY 28, 2017
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Summarized by Rebecca Wiley
Imagine watching your best friend diminish and there is nothing you can do to help. This is what happened to Charlie's parents. His health was slowly fading and they were having trouble letting go. Charlie had mitochondrial DNA depletion syndrome. Part of the reason for their struggle was the hope a doctor in the United States gave them about an experimental treatment. Dr. Hirano gave this hope without examining the child to see if he would be a good candidate. This treatment was used on mice and humans with a different genetic disorder caused by a completely different gene. The hospital that was taking care of Charlie would not allow the parents to transfer him to America. When the courts gave Dr. Hirano the okay to come see the baby, the baby's health was too far gone for his treatment. The parents blame the hospital and court system for taking a long time to allow him to see the child. The hospital claims that they were looking out for the baby and knew that he was to far gone for the treatment. Charlie ended up passing away Friday, July 28th. He could not see or even swallow. The baby appeared to have muscle atrophy and brain damage caused by his genetic disorder.
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It's very sad what happened to Charlie, and hopefully in the future the court system learns from its mistakes and expedites it process.ReplyDelete
What happened with Charlie is very unfortunate but unknown who was at fault. It is possible that he was never a good candidate for the treatment. But, their country never gave them the option to find out until it was too late. I do not think government should have control over the life of a human being, especially one who is under the age of 18 and has caregivers/parents to help determine the fate. The biggest ethical dilemma is did the government/doctors overstep their boundaries. We can relate this to the new crispr technique. Right now it is illegal in the United States because fears like "Designer Babies." Is the government over stepping their boundaries and inhibited the future for those with diseases this could cure, and research to cure other diseases. To each their own, but I believe that there needs to be a fine line between the two.ReplyDelete