Description:

Abstract

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 biomedicine with invaluable lessons about the complex relationship between science and society. 

Speaker Info

Shelly Benjaminy is a Bioethicist at the Donnelley Ethics Program, Shirley Ryan AbilityLab. She received her PhD in Experimental Medicine with specialization in Neuroethics at the University of British Columbia, Canada, and holds an MSc in Health Policy Research, and a BSc in Molecular Genetics from the University of Alberta, Canada. She also completed a clinical ethics fellowship at Providence Health Care and Provincial Health Services Authority in Vancouver, Canada. Shelly’s expertise in ethics is positioned at the intersection of research and medical care, and she provides both clinical and research ethics consultation services. She specializes in translational ethics, and her research is embedded within the context of active clinical trials and innovative therapy platforms.