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Eurosurveillance: The Ethics of Sharing Preliminary Research Fimdings During Public Health Emergencies: A Case Study From The 2009 Influenza Pandemic

sharon sanders

Editor-in-Chief & President
Eurosurveillance, Volume 19, Issue 24, 19 June 2014
Perspectives
THE ETHICS OF SHARING PRELIMINARY RESEARCH FINDINGS DURING PUBLIC HEALTH EMERGENCIES: A CASE STUDY FROM THE 2009 INFLUENZA PANDEMIC
N S Crowcroft ()1,2, L C Rosella1,2, B N Pakes2
Public Health Ontario, Toronto, Ontario, Canada
University of Toronto, Toronto, Ontario, Canada

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Conclusions

Despite the existence of several paradigms for pandemic ethics [38], many of these values were challenging to operationalise when it came to knowledge translation in a public health emergency. While all involved were undoubtedly trying to ‘do the right thing’, public health decision-makers dismissed unexpected research findings, researchers were reluctant to make them publicly available and all but one of the scientific journals approached were reluctant to publish, resulting in confusing messages in the media. As a solution, and as a moral imperative, several authors and groups have suggested unlimited and immediate sharing of information [39,40]. However, while this may often be necessary, it is not sufficient to provide a practical or ethical solution. Furthermore, it may not always be in the interests of decision-makers, researchers or the public. Further in-depth sociological, ethical and policy research is warranted to better understand the complex interactions that occur in these situations. Recent controversy regarding attempts to stop publication of gain-of-function research related to influenza A(H5N1) virus highlights the ongoing need for answers to these issues [41]. Rapid and extensive publications in high-impact factor journals in response to influenza A(H7N9) virus and Middle East respiratory syndrome coronavirus (MERS-CoV) infections indicate improved communication between the different solitudes, but a situation in which research findings ran counter to the prevailing ethos has not yet recurred to test the system. The events described above underscore the need for a critical review of the way unexpected or controversial research findings that arise during public health emergencies are evaluated by public health decision-makers and scientific journals, and how both the findings and the reviews are communicated transparently with the public.

In order to fully understand all the issues and perspectives, we would welcome a debate between researchers, public health personnel, scientific journals and the public, based on a clear set of ethical and professional norms, on how we might better address these issue going forwards and bridge the three solitudes during future public health emergencies.

http://www.eurosurveillance.org/ViewArticle.aspx?ArticleId=20831
 
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