Censorship and Science

Earlier this week the National Science Advisory Board for Biosecurity — a government advisory panel that provides recommendations to the US National Institutes of Health on how to restrict terrorist use of biotechnology — made an extraordinary request. It asked the editors of Science and of Nature, two of the world’s top scientific journals, to withhold key information from new studies of pandemic influenza.

Often confused with the common cold and other respiratory ailments that occur during the winter, influenza is a very serious disease. Seasonal flu epidemics occur every year, causing about 250,000 hospitalizations and 50,000 deaths annually in the US. Influenza is also one of the leading causes of death among young children, the elderly, and those with chronic illnesses.

Unlike many infectious diseases, even once you recover from the flu you are not necessarily immune from re-infection. That is because the virus that causes influenza evolves over time. Usually, these genetic mutations are relatively minor and exposure to earlier forms of the virus provide some protection against infection or serious disease.

Every so often, however, a new strain of flu emerges. It turns out that the influenza virus can infect other species of animals, including birds and pigs. Sometimes, particularly when birds, pigs and humans live in close contact, a single animal or person can be infected with multiple strains of influenza simultaneously. On a farm in a densely populated region of Southeast Asia, for example, a single chicken might be infected with both a bird and a human version of the flu virus. When this happens, these two viruses can recombine to create a brand new strain of influenza — a strain to which no one is immune. The consequences of this can be devastating.

If this new strain of influenza can be transmitted from person to person, as was feared might happen in 2005 with avian flu and in 2009 with swine flu, billions of people around the world may become infected. Should this happen, the death toll is likely to be in the tens to hundreds of millions. The 1918 Spanish flu pandemic, for example, is estimated to have killed anywhere from 20 to 100 million people, making it the most deadly single epidemic in history until the advent of AIDS.

Preventing the emergence and spread of influenza is critical, both from a humanitarian and an economic perspective. Studies aimed at developing new vaccines can help, but what is more important is basic research into when and how new strains of influenza emerge. Unfortunately, this is exactly the kind of research that the National Science Advisory Board for Biosecurity is now worried about.

The two pandemic flu studies in question, funded by the NIH and conducted by researchers in Wisconsin and in the Netherlands, looked at the genetic changes necessary to make the influenza virus transmissible to humans. Using relatively simple scientific techniques — the kinds that an amateur virologist with a relatively well-stocked laboratory in his garage could perform — these two groups of researchers succeed in creating new strains of flu that could be readily transmitted to humans.

These scientists did this using the same strain of avian flu that caused a short-lived outbreak of influenza among Asian poultry workers a few years back. Of the 600 or so people known to have been infected, over half died. Until now, however, this particular strain of flu was not able to spread easily from person to person. And despite news reports to the contrary, we don’t actually know how many people are likely to die should they be infected with this virus.

Nevertheless, biosecurity experts fear that, should a journal publish the precise recipe for making a humanized-version of avian flu, terrorists would be able to use this information for nefarious purposes. We scientists call this the “dual use” dilemma: scientific advances designed to better the human condition can sometimes be used for bioterrorism.

Dual use concerns about studies like these are not unfounded. However, what bothers me is the precedent that the National Science Advisory Board for Biosecurity’s request sets. The Board’s request is just that — a request that does not have any binding legal force behind it — but it smacks of government censorship of science.

Scientific advances are made primarily because information flows freely. The scientific method requires that researchers be able to replicate and validate the results of others, and to build upon them. This occasionally means that information that could be used by terrorist organizations or hostile governments is made available. But it also means that the 99.9% of legitimate scientists who are working to improve US and global biosecurity have the information that they need to defend the public against natural and man-made threats to health and safety.

There may be some situations in which self-censorship of scientific results is appropriate. This may indeed be one of those situations. However, the decision to withhold data or results should be made by the scientific community itself. It should not be in response to requests from politicians, public officials, or federal advisory panels.

Rather, we need to develop a clear and universally accepted set of rules to help guide us in making those decisions, rather than rely on the capricious whims of self-appointed government censors or journal editors. How the international scientific community might do this is unclear, but if they don’t step up to the plate — and soon — they may find that the decision has been made for them.

[This blog entry was originally presented as an oral commentary on Northeast Public Radio on December 22, 2011. It is also available on the WAMC website.]


About Sean Philpott-Jones

A public health researcher and ethicist by training, Sean holds advanced degrees in microbiology, medical anthropology, and bioethics. He is currently Chair of the Bioethics Department at Clarkson University's Capital Region Campus and Director of the Bioethics Program of Clarkson University-Icahn School of Medicine at Mount Sinai, and Director of two Fogarty-funded programs to provide research ethics education in Eastern Europe and in the Caribbean Basin. Until his term expired in August 2012, he served as Chair of the US Environmental Protection Agency’s Human Studies Review Board, an advisory panel that reviews the scientific and ethical aspects of research involving human participants submitted to the EPA for regulatory purposes.
This entry was posted in Censorship, Influenza, Policy, Research. Bookmark the permalink.

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