Each of the cases we have presented illustrates the complex exchange between stakeholders that creates situations which stimulate affinity for and distancing from research and scientific information. The nature of this behaviour depends on many contextual variables, including the utility of the scientific information and the political, cultural and social context in which information is generated and received. In the case of autism, society experienced a sense of urgency about an effect that had uncertain and controversial scientific legitimacy. The intensity and volume of coverage in the press itself overrode the critical content overtly contained therein, creating the possibility of a measles epidemic and a potential health crisis67–70
. The weight of press coverage and public response was carried by the United Kingdom, the country in which the Wakefield study was conducted and also the country in which the prime minister himself would not publicly disclose whether his child had received the MMR vaccine57
The advancement of the controversial link between MMR and autism is partly reminiscent of the notion of ‘neuro-policy’ we have described elsewhere71
. Actions in the political arena that led to the dissemination of information rejecting the causal link were in the interest of public health policy and allayed the fear of parents preparing to forgo the triple vaccine. Actions by advocacy groups such as Justice, Awareness, Basic Support (JABS) in the United Kingdom, advocated for parents to have the option to choose single rather than multiple vaccines and for continued research on the proposed link between MMR and autism. Personal convictions from researchers who supported this approach also called for a rethinking of the vaccination policy.
Given the history of anti-vaccination campaigns and the steady increase in the prevalence of autism, our findings are not surprising. Different interpretations of them are worthy of consideration, however. Note, for example, that environmental themes were reported more often because they were more newsworthy than the dominant brain and genetics research themes. Such a disparity in reporting might have prevented the wider community from entering into an unbiased and informed discussion of the scientific enterprise, led to misunderstandings and, as the other examples have also shown, resulted in sometimes irrational and potentially harmful decision-making. By contrast, we note that a recent blog report at Slate.com
on a possible link between television and autism72
stirred widespread coverage by US and UK press, radio and television while attracting substantial derision from the professional community and parental groups alike.
The media coverage of MMR can be also viewed as a reasonable reflection of the issues deemed most important by the public. In this regard, it could be argued that it is the official funding agencies that are out of step: media coverage of autism based on the controversy of MMR not only stimulated awareness of autism but also highlighted the need for additional research in the causes and treatment of this disorder73
. In the United States, for example, congressional hearings held from 1999 to 2000 on childhood immunization prompted an investigation by the Institutes of Medicine (IOM) to review immunization safety74,75
. Although the reports showed no apparent increase in the rates of autism associated with the MMR vaccine, the focus on autism had the benefit of bringing attention to autism research in other areas, including causes and treatment.
Each of the cases we have featured in this paper also highlights the diversity and complexity of issues that arise in the face of scientific discovery and public dissemination. No two cases are the same, yet they raise similar important questions about the responsibilities that scientists bear for societal behaviours that their results might elicit, and the responsibilities of journalists who report scientific discoveries. In a comprehensive study of genetics researchers and science writers, Gardner et al.
identified social responsibilities valued by each profession27
. Scientists expressed a commitment to report all the news necessary for open, free and well-informed debates, a trend that parallels globalization and mobility. Journalists expressed a commitment to balance accuracy against the need-for-speed in an era of increasingly complex information. Complexity increases when technological breakthroughs lead to new forms of social organization and even to changes in the mental representations of human experience27
There is no magic formula to predict the societal responses to advances in science, and whether these responses will have unintended consequences. A cycle of knowledge that draws on dynamic interactions among stakeholders rather than on relatively confined peaks of information dissemination would be one positive response to mitigating these unknowns. Interdisciplinary efforts that are embraced by all aspects of academia, citizen forums and innovative art and technology education would serve to achieve stronger partnerships among these groups. There is ample evidence for the need, precedent and effectiveness of such innovations on a global scale7,11
. As Gaskell et al.
wrote in Science
in 2005, “The public expect and want science and technology to solve problems, but they also want a say in deciding which problems are worth solving. [It is a matter] of seeing the public as participants in science policy with whom a shared vision of socially viable science and technological innovation can be achieved.”76
Like the rise of advocacy and dedicated research centres for autism in the 1990s, many for-profit biotechnology companies have surfaced to capitalize on cutting edge genetics research. Other new institutions arose in response to associated ethical concerns. For example, the council for Responsible Genetics, based in Cambridge, Massachusetts, USA, currently commissions studies of controversial issues and reports its findings in accessible publications. Among the topics it has investigated are genetically modified foods, the risks of gene therapy and designer genes and the controversial status of cloning. The recently established Gene-media Forum promotes public dialogue about genomics research and its implications for society. The Forum promises “a diversity of views” and “the fullest coverage of the social and political issues, as well as the science of the genetic revolution”27
No doubt the present perspective is limited by the examples selected, by the data sampled, by limitations inherent to the Lexis Nexis database and search engines, and by the specific definitions we have attributed to discourse for the peer-reviewed literature and for society through the press analyses. The views of children and adults with autism and other disorders of the CNS — for example, advocacy groups, educators and policy-makers — are also clearly vital to illuminating the true impact of the interacting forces of scientific discovery, dialogue and dissemination on the conceptualization of brain health and disease. Our own work continues in these areas.