Thursday, September 18, 2008

Censoring Science and scientists - The Insite Example




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(Insite, Canada's only facility for supervised injections of illicit drugs)

Censored is a powerful and friendless word with few public advocates. When Galileo, perhaps the most famous censored scientist, published his proof that the universe is heliocentric not geocentric (that the earth was not the centre of the universe but rather revolved around the sun) the idea was unacceptable to the religious beliefs of the Catholic church of late Renaissance Italy. The proof was banned, books were burned and Galileo himself sentenced to house arrest.

Today, there are few similar examples. Yet in the privacy of our lives, offices, businesses and yes even governments ideas and evidence are suppressed, often to the point of unspeakablity. Just try to get scientists working in industry or government to comment on their work: One is quickly referred to communications departments. This censorship, which is ongoing and comprehensive, has given us ‘whistle-blowers’ and freedom of information legislation.

Similar recent examples, albeit without the arrests, of modern censorship by government are easily found. Here is an example of the text of a presentation on the health effects of global warming by Dr. Julie Gerberding, head of the prestigious Centers for Disease Control and Prevention (CDC) in the US. The censored portions of her text (over half the text was censored) were made by President Bush’s office. The censorship was not made known to Gerberding’s audience and only later came to light when revealed by an investigative committee of the US Senate.

Dr. Julie Gerbending - October 23, 2007 - Testimony before the Senate Committee on Environment and Public Works (censored version)

“The health of all individuals is influenced by the health of people, animals, and
the environment around us. Many trends within this larger, interdependent
ecologic system influence public health on a global scale, including climate
change. The public health response to such trends requires a holistic
understanding of disease and the various external factors influencing public
health. It is within this larger context where the greatest challenges and
opportunities for protecting and promoting public health occur.  
Censored
Scientific evidence supports the view that the earth’s climate is changing. A broad array of organizations (federal, state, local, multilateral, faith-based, private and nongovernmental) is working to address climate change. Despite this extensive activity, the public health effects of climate change remain largely unadressed. CDC considers climate change a serious public health concern. ...”

Health and health care are quintessentially political. Nowhere is this perhaps more clear than when dealing populations already marginalized by poverty, skin pigment, body weight, gender ... addiction. Scientific findings and proposals confront popular ideologies embodied in our elected governments. We have the government we deserve.

Yet governments today can’t ignore science any more than they can ignore economics, accounting, finance. Modern governments are expected to act wisely to improve the lives of the electorate and to invest (our) money in public projects that work and to evaluate their effectiveness. We expect governments to make policy decisions not on the basis of ideology, but by using tools of science, particularly those drawn from fields of evaluative sciences, like epidemiology, economics, finance and others.

Faced with science that it can’t censor publicly, governments turn to other techniques - distortion, suppression, delay, denigration come to mind; these are less visible than the red pen, but all are attempts to create a culture that denigrates science as elitist, impractical and amoral (the last of wich is of course what science is supposed to be.

How is Science marginalized?

I have considerable sympathy for politicians: they often find themselves near the centre of ideologic discussions which by definition, are controversial and by the nature of politics, are public. Although expected to act rationally, politicians are in politics because of their ideologies and highly motivated to champion causes favoured by at least some of the public who voted for them or are likely to do so in the (near) future. They are also decent human beings trying to do the right thing in the face of considerable uncertainty: As are the government employees who do the background work needed to develop policy and recommend changes to policy.

So, in the face of uncertainty, called upon to make wise decisions using the best scientific evidence, yet finding that evidence contrary to current ideology, governments try to marginalize the science; both the science that is out there - published - and the science that the government itself commissions or otherwise controls. Harassment of scientists by denying, or threatening to deny, funding for research, or by denying access to data needed for their research, are common recourses of governments. In this case the Federal government cut all funding for research on Insite, precluding scientific evaluation of the facility. This makes it virtually certain that there will be no further comprehensive evaluations of Insite.

Disparagement of science and scientists is another tactic used by governments (and others) when faced with uncomfortable scientific evidence. In a classic instance of shooting the messenger, Health Minister Clement in testimony before the a recent session of the Standing Committee on Health (May 29, 2008) had this take:

“On the question of science, let me assure you I've read many of the studies that have been published on Insite. These studies have the weight of publication as well as some articulate proponents who insist that their positions are the correct ones. Many of the studies are by the same authors who, quite frankly, plough their ground with regularity and righteousness. Indeed, while in our free society scientists are at liberty to become advocates for their position, I've noticed that the line between scientific views and advocacy is sometimes hard to find as the issue on Insite is developed.”

These comments deprecate all of science (among other aspersions that published studies somehow have an unfair advantage over unpublished ones!) and are on the edge of libel in their characterization of the scientists evaluating Insite and, more broadly, Science itself.

Another tactic is to completely sidestep the evidence by creating pseudo-scientific alternatives. Usually this involves forming an Expert Advisory Committee chosen by the government. In the case of Insite, Minister Clement created an Expert Advisory Committee made up of a mix of individuals with some expertise in the general area of crime and drugs, but little in the area of evaluative epidemiology or in public health research or in the management of patients with severe drug addictions. The rationale for the choices is not given. The resulting report (available here) is a summary of commissioned work and the expert committee’s interpretations. The individuals selected to serve on the committee have worked in areas related to the problems of law enforcement and drug addiction, and I’ve no doubt of their good intentions; --, but the whole exercise avoids the critical scrutiny that publication offers and occasionally demands as a condition of publication, including peer review.

When governments want expert scientific opinion it is always unclear to me why they don’t use existing agencies with real expertise in research - in this case the Canadian Institutes for Health Research. Such an agency, at a clear and visible arms-length from government, could easily set up an advisory committee, commission further studies and ensure that the commissioned research meets acceptable national and international standards. And ensure that it is peer reviewed and published.

Governments may form advisory committees and then censor their reports. In the case of Insite, Minister Clement relied at least in part on the Ministerial Advisory Council on the Federal Initiative to Address HIV/AIDS in Canada. Formed in 1998, the Council issues reports (and I am informed has visited Insite) but these reports, and the work of the committee, are published at the discretion of the Minster of Health: The mandate (dated November 2007) includes this stunning paragraph:

“These [reports, policy papers, meeting minutes] are considered as confidential advice to the Minister and their release and dissemination are therefore subject to the Minister’s review and approval.”

In fact the last published annual report is for the year 2004-5. (I am told that the missing reports are currently being ‘translated’ and will be published shortly.) Will they be censored? Will they be complete? Will the Minister alter the record? Will we know? I do not doubt the good will, sincerity and expertise of the members of the Advisory Council, but I do question their independence and wonder at their willingness to accept such a constraint to their work, one that might and likely would limit and should certainly be perceived as limiting their areas of inquiry to those likely to be acceptable to the Minister, and raises some serious questions about the political naivete of scientists who sit on such committees.

Making science not policy the target

Is it really possible to scientifically evaluate a program like Insite? Science never reveals a truth, but rather works to remove uncertainty: politics claims to reveal truths and definitely creates uncertainty. Science rarely provides a yes/no answer: Is needle exchange effective? Do injection centres improve addicts’ health? The health of communities in which they live? These public health problems are too complex, the time frame for most evaluations too short and scientific strategies too limited (we can’t do randomized clinical trials for example). While it is certainly worthwhile to criticize the research (and the criticisms so far are school-book elementary) the criticism has not been accompanied by realistic proposals for alternative research designs.

One needn’t be an epidemiologist or an economist to realize that trying to keep track of the disparate and authority-suspicious population of patients using Insite is going to be a lot harder than, say, keeping track of a cohort of university professors or politicians. Governments and other ideologic critics often expect too much from science and then are critical and disparaging of the reports they receive. Isufficient scientific evidence is equated with showing no evidence of program effectiveness, a profoundly illogical conclusion.

Gathering evidence and then setting up special committees to examine and summarize it is not wrong - if done at arms’ length from government. The problem is misusing science: censoring, underfunding, disparaging the (limited) evidence science produces, in claiming, falsely, that no evidence equals no effect, and in camouflaging ideological policy as rational, science-based public management.

Cutting funding, non-publication of reports and deliberations of expert panels, denigration of science and scientists, bypassing the rigours of publication and independent peer review with confidential and in-house documents, and placing the blame for policy inadequacy on the scientists, are all forms of censorship. Politics is hard, the decisions are tough, the ideologies vocal and voting, but still, the right thing to do is to share and make pubic the policy dilemma and all of the extant evidence, however fragmentary and fragile.

thanks to Udo Schuklenk and Rosemary Jolly for helpful comments on this piece. 

47 comments:

Udo Schuklenk's Ethx Blog said...

excellent piece John!

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