“Media, politics and science policy: MS and evidence from the CCSVI Trenches-

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• 作者：Daryl Pullman (1)
  Amy Zarzeczny (2)
  André Picard (3)
  
• 关键词：Multiple sclerosis ; CCSVI ; Liberation therapy ; Priority setting ; Public pressure ; Media ; Politics ; Evidence
• 刊名：BMC Medical Ethics
• 出版年：2013
• 出版时间：December 2013
• 年：2013
• 卷：14
• 期：1
• 全文大小：207KB
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  48. The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6939/14/6/prepub
  
• 作者单位：Daryl Pullman (1)
  Amy Zarzeczny (2)
  André Picard (3)
  
  1. Division of Community Health and Humanities, Faculty of Medicine, Memorial University, 300 Prince Philip Drive, St. John’s, NL, A1B 3V6, Canada
  2. University of Regina, 110, 2 Research Drive, Regina, SK, S4S 0A2, Canada
  3. The Globe and Mail, 444 Front St. W, Toronto, ON, M5V 2S9, Canada
  

文摘

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 decision-making.