Ethan Weiss and the Story of Ruthie Weiss


Chapters:

2:30 Laura shows her math chops, subtracting 13 from 2019 and getting 1997.

6:25 The lightbulb moment: a sudden realization, courtesy of 4 years of medical school (and Dr. Google)

9:30 Diagnosis: “Getting the information as a relief more than anything else”

15:30 Prognosis: easier to get a handle on the physical than the emotional impact of albinism

22:58 A Daniel MacArthur tweet welcoming the coming world of gene-tested, gene-edited kids prompts Ethan to muse out loud (and online) about whether it would be better to live in a world with no Ruthies (spoiler alert: no).

27:00 How does the Weiss’ experience with their daughter affect their view on prenatal testing?

31:00 Ethan puts the question to Ruthie: does she like being a person with albinism? If you were having children, would you test?

38:00 If having people with differences is a net positive for the world, can we limit their choices, with the goal of making the world a better place? What should genetic counselors be doing differently?

Ruthie Weiss is making her big screen debut with a cameo role in Human Nature, a documentary looking at the potential implications of CRISPR – check it out here

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.”