We the Scientists by Amy Dockser Marcus

WE THE SCIENTISTS by Amy Dockser Marcus is an impressive look at “How a Daring Team of Parents and Doctors Forged a New Path for Medicine.” Dockser Marcus profiles the activity of a group of parents whose children have an extremely rare and fatal genetic condition called Niemann-Pick Type C disease (NPC). With this specific case story, she describes a growing movement that is “empowering patients to gather and analyze their own medical data.” Another example to which she refers involves Long Covid, including evidence of newer type collaboration in the blog post from the director of the NIH which references patient self-reported data collection. While reading Dockser Marcus’ inspirational book, I was struck by the possible connections to the more general and younger-student oriented title The Field Guide to Citizen Science which I reviewed a couple of years ago. WE THE SCIENTISTS received a starred review from Kirkus (an “expert mixture of reportage and storytelling”) and Amy Dockser Marcus has previously been recognized for her Wall Street Journal reporting with a Pulitzer Prize. To learn more about the tantalizing potential of patient advocacy, read an essay from the author titled “Making Medical Science More Democratic.”