We’re Already Designing Babies

Expanded genetic testing of embryos represents a new era of family planning. But how far should the technology go?

Emily Mullin
OneZero
Published in
12 min readFeb 27, 2019

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Illustration: Erik Carter

JJill Pinarowicz’s life has been shaped by a mutation in her mother’s DNA. The genetic error gave her two brothers a rare disease called Wiskott-Aldrich syndrome, which occurs in fewer than one in 100,000 births and almost exclusively affects males. Boys with the disorder are born without functioning white blood cells — a type of immune cell — which makes the body more susceptible to infections and causes spontaneous bleeding that can be life threatening. Within the first few months of life, babies with the disorder can develop eczema, severe nosebleeds, bloody diarrhea, and recurrent bacterial infections.

Both of Pinarowicz’s brothers passed away from complications of the disease. One died as a toddler, before she was born, and her other brother died at age 18, when Pinarowicz was a teenager.

“My whole childhood was completely traumatizing and chaotic,” she says. Her older brother’s life was punctuated by health emergencies. “He would end up in the hospital in the middle of the night, and we wouldn’t know if he was going to live or die.”

Wiskott-Aldrich syndrome is caused by a mutation in the WAS gene on the X chromosome…

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Emily Mullin
OneZero

Former staff writer at Medium, where I covered biotech, genetics, and Covid-19 for OneZero, Future Human, Elemental, and the Coronavirus Blog.