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

We the Scientists

We the Scientists


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.

Amy Dockser Marcus

Amy Dockser Marcus

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.

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Advance Copy

The path from idea to book may take myriad routes. The Advance Copy column, started in 2000 by NASW volunteer book editor Lynne Lamberg, features NASW authors telling the stories behind their books. Authors are asked to report how they got their idea, honed it into a proposal, found an agent and a publisher, funded and conducted their research, and organized their writing process. They also are asked to share what they wish they’d known when they started or would do differently next time, and what advice they can offer aspiring authors. Lamberg edits the authors’ answers to produce the Advance Copy reports.

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