Description:

The Master of Arts in Medical Humanities & Bioethics program presents

A Montgomery Lecture

with

Shelly Benjaminy, PhD
Bioethicist, Shirley Ryan AbilityLab

After the Hype: Lessons on Civic Engagement and Evidence-Based Medicine from the Chronic Cerebrospinal Venous Insufficiency Experience in Multiple Sclerosis

Chronic cerebrospinal venous insufficiency (CCSVI) research became a focus for multiple sclerosis (MS) when a small study suggested that an angioplasty-like procedure could reverse the symptoms of the disease. The CCSVI research trajectory was marked by public hope despite scientific skepticism, and was criticized for privileging scientific inquiry driven more by public pressure than by empirical evidence. Following recent CCSVI clinical trials that demonstrated negative results, two studies explored the perspectives of individuals with MS who: (1) participated in a multi-center Canadian CCSVI clinical trial; and (2) elected to forego CCSVI interventions. Results of these two studies will be discussed. Participant perspectives draw attention to lingering challenges in translation of biomedical research, including the imperative for carefully balancing civic engagement and scientific evidence. The CCSVI experience serves as an opportunity for reflection, and enriches the field of biomedical ethics with invaluable lessons about the complex relationship between science and society.