Amy Dockser Marcus—We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine

WE THE SCIENTISTS:
HOW A DARING TEAM OF PARENTS AND DOCTORS
FORGED A NEW PATH FOR MEDICINE
Amy Dockser Marcus
Riverhead Books, February 14, 2023, $28.00
Book ISBN: 9780399576133
Ebook ISBN: 9780399576157

Dockser Marcus reports:

The origin of my book goes back to the unexpected diagnosis of my mother with metastatic gallbladder cancer in 2004 and her death two-and-a-half years later. I learned during her treatment that pharmaceutical companies were not developing drugs for her very rare cancer.

After my mother died, I began traveling around the country on a grant from the Robert Wood Johnson Foundation and met people trying to improve the system for rare disease drug development. A policymaker who had given me helpful advice about my mother’s condition introduced me to a group of parents whose children had a fatal cholesterol metabolism disorder known as Niemann-Pick Type C disease (NPC).

The parents had joined forces with scientists to try to identify promising drugs and move them into clinical trials. I came to see that they were trying to construct a novel collaboration where both sides were recognized as experts and contributors to new scientific knowledge. The group wrestled with ethical questions that arose throughout their partnership.

I pursued the project mainly on weekends. In 2012, I told my editors at The Wall Street Journal, where I am a staff reporter, about my research. They encouraged me to write about it. The paper published a ten-part series in 2013. An agent reached out and asked if I had considered writing a book and sold my proposal to Riverhead.

I missed the agreed-upon deadline for the book, something I never do in my day job. One reason it took me longer than expected is that I wrote the book while continuing to work as a daily reporter on a busy beat. But I also wanted to see if the Food and Drug Administration would approve the drug the community had worked so hard to develop.

When the trial hit a setback, I realized that the process might continue for years. It forced me to think about the narrative. I realized that the main point of the book was not the fate of the drug, but the attempt to build an effective collaboration between amateur and professional scientists. Once I realized that, I was able to finish the book.

Contact info:

• Amy Dockser Marcus, 617-794-2557, Amy.Marcus@wsj.com, @amydmarcus
• Book: https://www.penguinrandomhouse.com/books/537125/we-the-scientists-by-amy-dockser-marcus/
• Marketing: Shailyn Tavella, stavella@penguinrandomhouse.com
• Agent: David Doerrer, David.Doerrer@a3artistsagency.com

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