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Mara Buchbinder on her latest book “Saving Babies? The Consequences of Newborn Genetic Screening”

baby feet

1. How did the idea for this project come about?

It was a question of being in the right place at the right time. I was brought on to the project after the initial investigators, who were two professors of sociology at UCLA, had developed this idea to study the impact of newborn screening in the clinic. They had learned that newborn screening was in this new phase of development where the state had just rolled out screening tests for a large number of disorders. They were really interested in doing something around the idea of medical uncertainty and this seemed like a perfect target for exploring some of those ideas, because it was really unclear what the impact of screening asymptomatic children for such a large number of disorders was going to be. At the time that this was getting off the ground, I was a graduate student. I was working on my dissertation research and I started out working on the newborn screening project as a research assistant. Over time, one of the investigators got busy with other projects, and I ended up taking on a bigger role, and working more closely with Stefan Timmermans, who co-authored the book with me.

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