Penn Bioethics Seminar Series (PBS) | Rebecca Mueller, PhD

The Genome and the Biome: Cystic Fibrosis @ Six Feet Apart

Rebecca Mueller, PhD
Postdoctoral ELSI Fellow, Medical Ethics and Health Policy, Perelman School of Medicine

Tuesday, October 12, 2021, 12:00-1:00p Eastern
Via Zoom. Register in advance: 
https://upenn.zoom.us/meeting/register/tJUrde-ppzMrGt0PRkan3KUua1a1TBDdkTnX 
The meeting link will be provided automatically upon registration.

Abstract: Long before COVID-19 made social distancing a household word, people with cystic fibrosis learned to practice such behaviors. Although cystic fibrosis is genetic, its pathophysiology involves chronic infection with opportunistic pathogens. While pathogens are often environmentally acquired, by the 1980s there was growing evidence that the bugs could also be transmitted between people with CF. This revelation irrevocably altered patient experience as the community learned to navigate infectious risk while policymakers developed increasingly stringent guidelines aimed at preventing cross-infection. 

“The Genome and the Biome: Cystic Fibrosis @ Six Feet Apart,” is a history and ethnography of cystic fibrosis community that takes the relatively common genetic disease, cystic fibrosis, as a case study of novel diagnostic technologies, risk, and sociality. In this talk, Mueller presents an overview of the project, detailing the role that CF communities have played in shaping individuals’ experiences of a rapidly changing prognosis and highlighting some of the ethical, legal, and social implications of the CF story.

For more information, please contact Mary.Pham@pennmedicine.upenn.edu.