My training as a physician-scientist likely would have nudged me to use technology to remove or fix Ruthie if we had been given the chance.
But having Ruthie in our lives offers Palmer and me a perspective we could not have had before she arrived. We know that Ruthie’s presence in this world makes it a better, kinder, more considerate, more patient, and more humane place. It is not hard, then, to see that these new technologies bring risk that the world will be less kind, less compassionate, and less patient when there are fewer children like Ruthie. And the kids who inevitably end up with oculocutaneous albinism or other rare disease will be even less “normal” than they are today.
The full article is definitely worth reading: Should ‘broken’ genes be fixed? My daughter changed my thinking – STAT
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