Big Science opposes embryo editing. Has anyone asked patients? 

Last year’s scandal involving CRISPR-edited embryos brought to term led to a rare moment of near consensus in science: Leaders from around the world called for a global moratorium on such procedures.

But to people born with debilitating genetic disease — those that can be passed down to children — the issue is not so black and white. As STAT’s Sharon Begley reports, patients are pushing back on the idea that editing embryos is ethically fraught, contesting scientific conventional wisdom in hopes of sparing future generations from serious disease.

“It’s easy to get on your high horse when you’re not in our position,” said Neena Nizar, who, like her two sons, carries a disease-causing genetic mutation. “If editing an IVF embryo is the best option to mitigate the pain that a child would otherwise suffer, then give us the choice.”

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