Bioethics News

Gene Editing Might Mean My Brother Would’ve Never Existed

August 10, 2017

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Responses to this feat followed well-trodden trails. Hype over “designer babies.” Hope over new tools to cure and curb disease. Some spin, some substance and a good dose of science-speak. But 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. He lived past his first year thanks to marvels of modern medicine. A shunt surgery to drain excess cerebrospinal fluid building up around his brain took six attempts, but the seventh succeeded. Aside from those surgeries’ complications and intermittent illnesses due to a less-than-robust immune system, Jason was healthy. Healthy and happy — very happy. His smile could light up a room. Yet, that didn’t stop people from thinking that his disability made him worse off. My family and those in our religious community prayed for Jason. Strangers regularly came up to test their fervor. Prayer “circles” frequently had his name on their lists. We wanted him to be healed. But I now wonder: What, precisely, were we praying for?

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Image via TIME The author (left), with his brother Jason Courtesy of Joel Reynolds 

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.