Amy Dockser Marcus's "We the Scientists"

Amy Dockser Marcus is a staff reporter for The Wall Street Journal. She won a Pulitzer Prize for Beat Reporting in 2005 for her series of stories about cancer survivors and the social, economic, and health challenges they faced living with the disease. Dockser Marcus is the author of The View from Nebo and Jerusalem 1913. She has a master of bioethics degree from Harvard Medical School and lives in Boston.

Marcus applied the "Page 99 Test" to her new book, We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine, and reported the following:

Page 99 in my book comes at a crucial moment in the narrative. A group of parents whose children have a fatal cholesterol metabolism disorder called Niemann-Pick disease type C have been working together with scientists to identify a drug that might treat the condition. They have gathered at a pivotal meeting to review the data and determine next steps. It quickly becomes apparent that the scientists are not sharing all the available information. One leading drug candidate is described in the scientists’ presentation only as “New Hit.” When the parents ask for the name, the scientists refuse to share it. The tension reveals fissures in the nascent partnership that call into question whether the scientists and families can truly work together.

Despite the importance of the moment, the Page 99 Test falls short because there are only a few lines on that page. There is not enough information for readers to understand what is at stake or the contours of the dispute. The goal of the collaboration is to find promising drugs and rapidly advance their development to the point that drug companies might step in. The scientists are holding back publicly sharing the name because they want to first secure a patent, a crucial step to establish rights to the intellectual property. Without a patent, the scientists argue, companies won’t want to commercialize the drug, the goal of the project. From the parents’ perspective, though, sharing the name of New Hit is a test of the collaboration. Do the scientists truly believe that parents and scientists each offer essential expertise? If so, then their partnership should include weighing evidence and making judgements together. How can they devise a strategy for drug development if only some of the people have access to all the information? Finding a way to answer these questions and advance science is the heart of the book.

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--Marshal Zeringue