albinism

Prenatal testing was a normal part of life for UCSF cardiologist Ethan Weiss and his wife when they were expecting their second child, something you did without a second thought. But thirteen years after the birth of Ruthie Weiss, Ethan has plenty of second thoughts about assumptions people make – assumptions he would have made – about the relative burdens and benefits of a life with a different set of challenges. Would Ruthie’s life be better with her albinism? Would their life as a family be better? Would society be better off without Ruthies? Definitely not, says Ruthie’s dad. Not an argument against prenatal testing – but Ethan’s story presents a very salient case for the importance of not testing “without a second thought.”