Designer Babies Aren’t Futuristic.They’re Already Here.
Are we designing inequality into our genes?
October 22, 2018
At first, Matthew assumed the weakness in his knee was the sort of orthopedic nuisance that happens when you turn 30. It was weeks before he consulted a doctor, and months before it occurred to him that there could be a connection between his worsening limp and a cousin’s shoulder problem when they were kids. DNA testing confirmed it: Matthew, like his cousin, had a genetic form of dystonia, a condition where muscles contract uncontrollably. Their grandfather most likely had dystonia as well.
I’d met Matthew only a few months earlier, when he’d married my friend’s daughter, Olivia, in one of those hip old New York hotels with an elegant downtown vibe. Since I was the only genetic counselor of their acquaintance, they brought their questions to me. With their permission, I am sharing their story. I have changed their names to preserve their privacy.
Matthew was lucky. His was a mild version of DYT1 dystonia, and injections of Botox in his knee helped. But the genetic mutation can cause severe symptoms: contractures in joints or deformities in the spine. Many patients are put on psychoactive medications, and some require surgery for deep brain stimulation.
Their kids, Matthew and Olivia were told, might not be as lucky. They would have a 50–50 chance of inheriting the gene variant that causes dystonia and, if they did, a 30% chance of developing the disease. The risk of a severely affected child was fairly small, but not insignificant.
My friends learned there was an alternative. They could undergo in vitro fertilization and have their embryos genetically tested while still in a laboratory dish. Using a technology called pre-implantation genetic testing, they could pick the embryos that had not inherited the DYT1 mutation.
It would be expensive—costs for IVF in the US average over $20,000 for each try, and testing can add $10,000 or more. And it would require an unpleasant two-week process of ovarian stimulation and egg harvesting. “It wasn’t the way I saw myself making a baby,” Olivia told me. But they wanted what the procedure could offer them: a guarantee that dystonia was eliminated for the next generation, and beyond.