The Cost of Not Knowing a Huntington’s Diagnosis

When Jennifer Leyton was going through IVF, her doctors would tell her very little. They turned off the ultrasound screen facing her so she could not count the number of eggs retrieved. They kept secret the number of fertilized embryos. They did not even say how many they transferred to her womb. This secrecy might have been maddening for many IVF patients, but for Leyton, it was her choice.

She chose secrecy because she wanted to avoid finding out whether she had inherited a mutation for Huntington’s. The neurological disease usually manifests between ages 30 and 50—with a jerky movement, or a slurred phrase—and progresses as the cells in the brain slowly die. She was still healthy, but her chances of having inherited her mother’s Huntington’s mutation were 50-50. Over a decade and a half, Leyton had watched as her mother’s hands became unsteady, dropping cigarettes that set her clothing on fire. She lost her driver’s license. She eventually stopped walking. The disease is always fatal.

Leyton did not want this fate for her future children. So she found a fertility clinic three states away that would perform in vitro fertilization, screen the resulting embryos for the Huntington’s mutation, and transfer only the healthy ones. Lastly, because she might deduce whether she herself carried the mutation by comparing the number of embryos fertilized with the number transferred, the clinic