After weeks of debate, the decision was finally made in February to publish in full two studies that report the cultivation of H5N1 bird flu virus mutants that can pass between mammals. The decision was made with the caveat of delaying publication, in part to settle the anxieties of the public over the dangers of this work. While this caveat shows recognition of the public’s fears from the World Health Organisation, the entire case highlights a considerable problem that divides biomedical research from the public.
Most people would have first heard about the H5N1 research when it reached the headlines for the dilemma it caused; publish the details and risk an increased chance of accidental release and bioterrorism, or withhold the specifics and risk delaying research that could prevent a natural epidemic. Understandably, this caused public concern, not least because it was a situation with huge implications for individuals, but over which these individuals had no control.
This concern was not helped by the contradictory messages conveyed during the debate. A plethora of articles, many published in Nature and Science, have been written on the topic, covering a range of views. However, the most alarming are those bringing into question whether H5N1 poses as much of a risk as estimated, whether the safety provisions for this research were adequate, and whether the research will even be of any benefit.
This level of uncertainty about work that has already been done and that carries significant risks to the population can only form a barrier between the public and the scientific community. Asking the public to then trust this same scientific community to evaluate and decide between two worrying prospects on their behalf is difficult.
There is no doubt that the public could not realistically have been involved in the decision over whether or not to publish the work. There is no possible way that the population at large could be given a full understanding of the research and its implications at this stage so that they could make an informed mass decision. Perhaps, though, more open discussion of the research before it was done may have avoided any barriers, or at least only resulted in transparent ones.
Until publication, most research is kept vigorously from the radar of potential competitors; understandable in a ruthless system of funding and a ‘publish-or-die’ career path. But public health research is surely meant to be for the so-called greater good. Open discussion of research at all stages should surely be encouraged, to maximise efficiency and ensure that what is being done is in the interests of public health.
In the case of the H5N1 mutants, prior discussion in an open arena would likely have raised the issues that were brought up in the high-speed and confusing debate that the results sparked. The value of the research could have been widely assessed and the safety level required could have been agreed. The risk to the public could have been clarified and the action to be taken if a transmittable virus was produced could have been determined before the situation arose. Alongside this, the issue would have been accessible to the public and the population could at least have had their say. There could have been reasonable dialogue along the way to ensure that everyone’s concerns were addressed appropriately.
As biomedical research continues to impact on everybody’s lives, greater transparency must be achieved for future work to retain and bolster public trust. Whether it likes it or not, the scientific community sits amongst every other aspect of our society and must be prepared to listen and take into account the concerns of the public before it ploughs ahead with research that has such huge repercussions. In delaying the publication of the H5N1 studies, the World Health Organisation at least acknowledges this. But in future, the public deserves a lot more a lot earlier.
Originally published at PLoS blog Speaking of Medicine, 15th March 2012
IMAGES: CDC/ Cynthia Goldsmith, Jacqueline Katz, Sherif R. Zaki via Wikimedia
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