8 research outputs found
Media, politics and science policy: MS and evidence from the CCSVI Trenches
Background: In 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible
cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received
little more than passing interest in the international scientific and medical communities, his ideas became the
source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to
social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered
remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public’s call
for action.
Discussion: We present three different perspectives on this evolving story, that of a health journalist who played a
key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the
unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert
panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the
evidence as it emerges.
Summary: This story raises important questions about resource allocation and priority setting in scientific research
and science policy. The growing power of social media represents a new level of citizen engagement and
advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made.
It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and
further emphasizes calls to improve science communication so as to support balanced and informed decisionmaking