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We're still a long way from a cure for Down Syndrome, and some people would like it to stay that way:
"If Down syndrome were completely cured, the world would lose something from the absence of that culture"
...
“So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”
...
“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.
...
On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.
Maybe the people who worry about that loss can volunteer to have their limbs amputated, or their brains homogenized, so they can become useful object lessons for others.
I can understand the trepidation Mr. Long feels about whether his son would become 'someone else' if he were 'cured', but it's hard for me to get behind much of the protest here.
“We now see very few persons with the symptoms of polio or the scars of smallpox,” said Art Caplan, head of medical ethics at New York University Langone Medical Center. “The same fate, despite the protests of some, awaits Down syndrome and other genetic diseases if engineering genes creates cures.”
"If Down syndrome were completely cured, the world would lose something from the absence of that culture"
...
“So much of Down syndrome does impact the personality and character of the person,” said Long, 54. “In Connor’s example, we’ve known him for 19 years. We don’t want a wholesale change.”
...
“When you go as far as a ‘cure,’ that’s when folks step back and go: ‘We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives,’” said Cevallos, mother of a 5-year-old with the condition.
...
On the other hand, it’s unclear what costs there may be to shutting down the mechanism that creates people who offer lessons in patience, kindness -- and what it means to be human.
Maybe the people who worry about that loss can volunteer to have their limbs amputated, or their brains homogenized, so they can become useful object lessons for others.
I can understand the trepidation Mr. Long feels about whether his son would become 'someone else' if he were 'cured', but it's hard for me to get behind much of the protest here.
“We now see very few persons with the symptoms of polio or the scars of smallpox,” said Art Caplan, head of medical ethics at New York University Langone Medical Center. “The same fate, despite the protests of some, awaits Down syndrome and other genetic diseases if engineering genes creates cures.”
