Science is for everyone

The Ivory Tower Doesn’t Own Science

We’ve been watching patients, caregivers, activists, and independent researchers around the world reshape and reimagine how health research gets done. This special collection explores what happens when people take research—long considered the domain of universities, hospitals, pharmaceutical companies, and laboratories—into their own hands.

What Is Biomedical Citizen Science?

Biomedical citizen science refers to public participation in health and bioscience research. It includes patient-led studies, self-experimentation, DIY bio, and community-based public health projects—often conducted without oversight from regulatory bodies or scientists based in universities, hospitals, or other formal institutions. These efforts raise important questions about credibility, authority, safety, and innovation, as well as the ethics and politics of who gets to produce knowledge in medicine and whose knowledge counts.

What’s in the collection?

• Community-led public health and participatory epidemiology

• Patient-driven research and disease tracking

• DIY science and biohacking in nontraditional spaces

• Self-tracking and self-experimentation for health

• And more!

Meet the Editors

Guest edited by Christi Guerrini (Baylor College of Medicine); Joanna Kempner (Rutgers University), Lisa Rasmussen (University of North Carolina-Charlotte) and Anna Wexler (University of Pennsylvania, this collection brings together 12 original contributions that examine the social, ethical, legal, and scientific complexities of biomedical citizen science—and its transformative potential for how we understand and improve human health.

Read our Introduction: Diverse, Emergent, Disruptive: Perspectives on and Developments in Biomedical Citizen Science

In the News

🎧Thanks to WHYY’s The Pulse for featuring Joanna Kempner & Anna Wexler’s research on Biomedical Citizen Science.

June 14, 2024, “The DIY Medicine Movement” Featuring Anna Wexler
University of Pennsylvania medical ethicist Anna Wexler discusses her research into the DIY medicine movement—what drives people to experiment outside of institutional science, how these communities operate, and the complex ethical challenges they raise for researchers, clinicians, and regulators.
→ Listen to the episode

August 16, 2024, “The Promise and Future of Psychedelics Research” Featuring Joanna Kempner

Sociologist Joanna Kempner discusses her new book, Psychedelic Outlaws: The Movement Revolutionizing Modern Medicine, and her research into Clusterbusters—a patient-led group using psilocybin to treat debilitating cluster headaches. The episode explores how this community forged its own path when medicine failed to provide answers, raising questions about scientific authority, access, and underground innovation.
→ Listen to the episode