Research Ethics and Policy Series (REPS): Amy Dockser Marcus

12:00pm - 1:00pm • Hybrid: RCH B102AB, Richards Bldg., 3700 Hamilton Walk (and virtual via Zoom)

2023-11-08 12:00:00 2023-11-08 13:00:00 America/New_York Research Ethics and Policy Series (REPS): Amy Dockser Marcus Book Talk: Amy Dockser Marcus We the Scientists: How the Rise of Patient-Led Research is Changing Medicine Amy Dockser Marcus Wall Street Journal, Staff Reporter Author Patients are no longer leaving science to the scientists. They are collecting and analyzing their own medical data, using the internet to find and connect online with other groups, and conducting their own research projects. Patient-led research plays an important and expanding role in the search for new therapies, particularly in diseases that are rare or overlooked by the medical and business communities. Amy Dockser Marcus, a Pulitzer Prize-winning reporter for the Wall Street Journal, spent years following a group of parents and scientists that worked together to develop a drug to treat a fatal and rare genetic disease. She will talk about the findings in her new book, We the Scientists, the rise of citizen science, and the ethical, social, and scientific challenges that emerge when patients, families, clinicians, and scientists set out to work as partners in the search for cures. Lunch provided for in-person attendees Livestreaming available via Zoom Hybrid: RCH B102AB, Richards Bldg., 3700 Hamilton Walk (and virtual via Zoom) Penn Medical Ethics

Patients are no longer leaving science to the scientists. They are collecting and analyzing their own medical data, using the internet to find and connect online with other groups, and conducting their own research projects. Patient-led research plays an important and expanding role in the search for new therapies, particularly in diseases that are rare or overlooked by the medical and business communities. Amy Dockser Marcus, a Pulitzer Prize-winning reporter for the Wall Street Journal, spent years following a group of parents and scientists that worked together to develop a drug to treat a fatal and rare genetic disease. She will talk about the findings in her new book, We the Scientists, the rise of citizen science, and the ethical, social, and scientific challenges that emerge when patients, families, clinicians, and scientists set out to work as partners in the search for cures.