The ethics of sharing preliminary research findings during public health emergencies: a case study from the 2009 influenza pandemic

Eurosurveillance
Volume 19, Issue 24, 19 June 2014
http://www.eurosurveillance.org/Public/Articles/Archives.aspx?PublicationId=11678

Miscellaneous
Note from the editors: Communication challenges in times of an emerging public health situation
Eurosurveillance editorial team1
European Centre for Disease Prevention and Control (ECDC), Stockholm, Sweden
In this issue, Crowford et al. present a perspective in which they turn an experience from their life as scientists during an evolving public health situation into an interesting case study that poses a number of questions well worth discussing [1]. Their description of difficulties in sharing unexpected scientific findings in an emerging situation illustrates the potential for tensions, due to different roles, between three important actors for public health action – scientists, scientific/medical journal editors and policy-makers – whose common denominator is individual/public health.
Facilitating rapid communication to allow public health action has always been core to the mission this journal [2], and we believe that our successful example during the 2009 influenza A(H1N1) pdm09 pandemic has been followed and we are aware that a number of journals now provide possibilities for expedited/fast-track processing of papers. Fast-tracking of peer-reviewed information poses several challenges: scrutinising evidence and disseminating it under time-pressure puts a strain on scientists, editors and public health decision-makers alike. In cases where findings are unexpected and new, and may or may not be plausible for some, such as exemplified in the paper in this issue, these challenges will even be aggravated. In the case study presented, this led to a delay in coordinated communication and publishing in a peer-reviewed journal even though the authors had shared their correct findings early with international organisations and had submitted respective articles to scientific journals.

Another very different example of possible issues around timely communication occurred during the outbreak of severe haemolytic uraemic syndrome caused by Shiga-toxin-producing Escherichia coli O104 in Germany in 2011 [3,4]. Non-validated findings pointing (wrongly) towards cucumbers imported from a specific European country were communicated early by a politician via the media [5] and had considerable economic impact in the country concerned and resulted in political debate about responsibilities and compensation [6,7]. This example shows the dilemma that politicians may face in an evolving situation where expectations to find the source of an outbreak quickly and take measures to stop it are high and they feel pressed to communicate rapidly.

A further example that shows how the different roles of the three parties mentioned above can lead to differing views are the discussions around the publication of the gain-of-function experiments for the influenza A(H5N1) virus led by R Fouchier and Y Kawasoka, in 2012 [8-9]. When the papers were finally published, this was after an intensive debate and resulted in a considerable delay from the initial dates of submission [10-13]. Notwithstanding this, the intense discussions of these papers were valuable for considering the ways in which research is scrutinised and how public health views should also be taken into account in gain-of-function studies even if research should have its freedom as long as the safety (both the workers’ and of the general public) are ensured. The list with examples for scientific findings with an impact on individual/public health that lead to communication challenges through associated ethical considerations influenced by diverse perspectives and backgrounds of the actors, is certainly longer and it also played a role in information about the narcolepsy cases that were associated with vaccination with the pandemic vaccine against pandemic influenza A(H1N1) pdm09, Pandemrix, after signals had been detected in Finland and Sweden [14].

The examples above and the paper by Crowcroft et al. show that debate and close cooperation is necessary to strike a balance ‘between the proprietary rights of scientists, the needs of public health and the interests of the public’ and an important part in this is of course for public health institutes and international organisations such as the European Centre for Disease Prevention and Control and the World Health Organization, to act as an intermediary between researchers and policy makers by assessing risks and the available evidence to facilitate rapid public health action and with this in mind we agree with the authors that ‘When public health is at stake, information must be shared in a structured and transparent manner that communicates the level of uncertainty and meets the needs of all involved.’

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

During the 2009 A(H1N1) influenza pandemic, a suite of studies conducted in Canada showed an unexpected finding, that patients with medically attended laboratory-confirmed pandemic influenza were more likely to have received seasonal influenza vaccination than test-negative control patients. Different bodies, including scientific journals and government scientific advisory committees, reviewed the evidence simultaneously to determine its scientific validity and implications. Decision-making was complicated when the findings made their way into the media. The normal trajectory of non-urgent research includes peer-review publication after which decision-makers can process the information taking into account other evidence and logistic considerations. In the situation that arose, however, the congruence of an unexpected finding and the simultaneous review of the evidence both within and outside the traditional peer-review sphere raised several interesting issues about how to deal with emerging evidence during a public health emergency. These events are used in this article to aid discussion of the complex interrelationship between researchers, public health decision-makers and scientific journals, the trade-offs between sharing information early and maintaining the peer-review quality assurance process, and to emphasise the need for critical reflection on the practical and ethical norms that govern the way in which research is evaluated, published and communicated in public health emergencies.