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The unexpected wonders of my son's short life | James G. Robinson | Your Body on Tech
Where this was said
Conversation: Technology, Medical Progress & the Ethics of Genetic Optimization
At 52:24 · chapter starts 49:50
Manoush asks whether Robinson ever held out hope for a technological breakthrough — a gene therapy, a new procedure — that might have saved Nadav. Robinson acknowledges medicine is advancing rapidly, but insists that the three surgeries Nadav endured were not cures but hacks, and that humility about the limits of what medicine can know is itself therapeutic. He speculates that in 80 years, a single-ventricle diagnosis may be corrected in utero — but then turns directly to the harder question Manoush poses: should embryos be genetically screened to avoid defects like Nadav's? His response is firm and personal. Doing so would have meant never knowing Nadav. And that would have been the worst thing he could imagine. The privilege of parenthood, he argues, comes precisely from embracing what you cannot predict or control [1] — James G. Robinson "Should they have selected an embryo without the defect? Robinson's answer is direct: then they would be missing their son. And that would b…" 16:05 .
Would you genetically screen embryos to eliminate a defect like Nadav's? Robinson's answer is a counter-question: would you prefer never to have met him? He's not opposed to medical progress. He's opposed to the assumption that optimizing for health always produces a better life. Some of the most profound human experiences come precisely from what we cannot control.
While in the hospital, Nadav's body grew entirely new veins to rebalance a circulation his heart couldn't sustain. Robinson calls it magical. The surgeon who operated on him for ten hours said she could read his character in the quality of his scarring. Most of us cut a finger and forget the healing. Robinson can't take it for granted anymore.
