In the Know and in the News: How Science and the Media Communicate About Stem Cells, Autism and Cerebral Palsy

Abstract

Stem cell research has generated considerable attention for its potential to remediate many disorders of the central nervous system including neurodevelopmental disorders such as autism spectrum disorder (ASD) and cerebral palsy (CP) that place a high burden on individual children, families and society. Here we characterized messaging about the use of stem cells for ASD and CP in news media articles and concurrent dissemination of discoveries through conventional science discourse. We searched LexisNexis and Canadian Newsstand for news articles from the US, UK, Canada and Australia in the period between 2000 and 2014, and PubMed for peer reviewed articles for the same 10 years. Using in-depth content analysis methods, we found less cautionary messaging about stem cells for ASD and CP in the resulting sample of 73 media articles than in the sample of 87 science papers, and a privileging of benefits over risk. News media also present stem cells as ready for clinical application to treat these neurodevelopmental disorders, even while the science literature calls for further research. Investigative news reports that explicitly quote researchers, however, provide the most accurate information to actual science news. The hope, hype, and promise of stem cell interventions for neurodevelopmental disorders, combined with the extreme vulnerability of these children and their families, creates a perfect storm in which journalists and stem cell scientists must commit to a continued, if not even more robust, partnership to promote balanced and accurate messaging.

A Dichotomy of Information-Seeking and Information-Trusting: Stem Cell Interventions and Children with Neurodevelopmental Disorders

“…Results from a content analysis of print media coverage of stem cell therapies for CP and ASD [10] were used to further refine the survey. Members of the research team iterated and refined the research instrument to ensure its content validity.…”

“…The target population consisted of individuals 18 years or older with a child with CP or ASD. We focused on these groups because: (1) CP and ASD are two of the most common neurodevelopmental disorders affecting children, (2) stem cell clinical trials are underway for each, and (3) both CP and ASD have been a focus in stem cell clinic advertising [8,10,11,18].…”

“…Stem cell tourism, where individuals and their families travel outside their country of residence to receive stem cell interventions, has become an increasingly popular form of medical tourism [9]. Previous research has demonstrated interest in stem cell tourism for children with CP and ASD, with some parents chronicling their stories in the print media [10,11]. The vulnerability of children in stem cell tourism makes this a particularly salient concern [12].…”

“…The portals for information about stem cell interventions abroad have been well-documented and are varied: the Internet, direct-to-consumer advertising, social media, news media and patient advocacy groups [10,11,[13][14][15]. Direct-to-consumer advertising, through stem cell clinic websites and social media, is one of the primary avenues of information and regularly provides optimistic evaluations of the promise of these interventions [7,16].…”

“…News coverage of stem cell interventions abroad tends to be largely positive, often providing an uncritical account of the benefits and risks of stem cell interventions abroad. Media engagement with researchers results in the most balanced perspective [10,11]. Other information sources, such as patient advocacy groups and scientific organizations, provide passive online educational information.…”