Viewpoint: My daughter taught me that ‘broken’ genes shouldn’t always be fixed

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Ethan Weiss and his daughter Ruthie. Credit: Ethan Weiss

Ruthie is a vibrant teenager. She will never learn how to drive and or read normal-sized print without assistive technology, but she is fiercely proud of who she is. And though she still complains about always needing to wear a hat, use sunglasses, and apply sunscreen, she remains steadfast in her commitment to loving herself as she is and seeing herself and her [oculocutaneous albinism] as one.

We have at our fingertips incredibly powerful tools that will let us do things that were unimaginable even 20 years ago. We can now diagnose genetic conditions before pregnancy. We can select genetically “optimal” embryos. In the near future, we will be able to “fix” the broken ones.

Related article:  Viewpoint: 4 ways the FDA must evolve to deal with fast-moving technologies and health threats

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.

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.

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