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opinion | jim kozubek

Would you edit your genes?

Advances in gene therapy come with ethical and medical dilemmas

By July, the swelter of summer was upon us. I felt locked into the crucible of Boston, so I headed West by highway. The roads were lined with milkweed and purple violets; the sky opened up, and rain clouds coasted in the distance. And then, I was there. I met Jameson Golliday, a blue-eyed boy, age 2, on a small patch of lawn in Bloomington, Ill.

Jamie has a rare disease called X-SCID, or Bubble Boy disease, which means he was born with no immune system. But last year he had his cells edited to add a gene called IL-2. During our visit, Jamie played in the dirt, picking up sticks and rocks and handing them to me. “It was scary in some aspects,” his mom, Jennifer Golliday, said of the treatment. “I was willing to risk it.” He now has a small army of T-cells, and no longer wears a mask. By early afternoon, he asked to hold my hand.

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