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.
Matthew and Olivia don’t think of themselves as having a “designer baby.” That term has negative associations, suggesting something trivial, discretionary, or unethical. They weren’t choosing eye color or trying to boost their kid’s SAT score. They were looking out for the health and well-being of their future child, as parents should.
We risk creating a society where some groups, because of culture or geography or poverty, bear a greater burden of genetic disease.
Public opinion on the use of assisted reproductive technology consistently draws a distinction between preventing disease and picking traits. The Johns Hopkins Genetics and Public Policy Center, which contacted over 6,000 people through surveys and focus groups from 2002 to 2004, summed up its findings this way: “In general, Americans approve of using reproductive genetic tests to prevent fatal childhood disease, but do not approve of using the same tests to identify or select for traits like intelligence or strength.” The dystonia gene is in a gray zone—some people born with it live perfectly healthy lives—yet presumably few parents would criticize Matthew and Olivia’s choice to weed it out.