If gene editing had been approved, my brother would never have been born

| | August 21, 2017

[Editor's note: Joel Reynolds is a postdoctoral fellow in bioethics at the Hastings Center..]

For the first time in the United States, scientists successfully edited the genes of a human embryo.

For me, this breakthrough is not just about science or medicine or the future of humankind. It’s about faith and family, love and loss. Most of all, it’s about the life and memory of my brother.

Jason was born with muscle-eye-brain disease. In his case, this included muscular dystrophy, cerebral palsy, severe nearsightedness, hydrocephalus and intellectual disability.

His smile could light up a room. Yet, that didn’t stop people from thinking that his disability made him worse off.

Although muscle-eye-brain disease does not result from a single genetic variant, researchers agree that a single gene, named POMGNT1, plays a large role. Perhaps scientists will soon find a way to correct mutations in that and related genes. Perhaps people will no longer be born with it. But that means there would never be someone like Jason.

I wish we could cure cancer, relieve undue pain and heal each break and bruise. But I also wish for a world with Jason and people like him in it. I want a world accessible and habitable for people — full stop — not just the people we design.

The GLP aggregated and excerpted this blog/article to reflect the diversity of news, opinion, and analysis. Read full, original post: Gene Editing Might Mean My Brother Would’ve Never Existed

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