When Jennifer Leyton was going through IVF, her doctors would tell her very little. They turned off the ultrasound screen facing her… . They kept secret the number of fertilized embryos. … 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.
A genetic test that predicts almost perfectly whether someone will develop the disease has been available since the late 1980s, but only 8 percent of people at risk choose to test… . All someone at risk for Huntington’s might gain is certainty of how he or she will die. For this reason, a niche IVF market has sprung up for people like [Jennifer] Leyton who want no foresight of their own future but want to keep their children from ever worrying about the disease.
[IVF doctor Harvey] Stern says nondisclosure testing is ultimately about giving patients a choice not to know: “People have said, ‘How can you make people go through IVF when they do not need it?’ My answer has always been: ‘I’m not making anybody go through it.’”
Read full, original post: The Cost of Not Knowing a Huntington’s Diagnosis