From nannyism to public disclosure: the BSE Inquiry report

If ever one needed proof of how difficult it is to formulate health policy in the absence of hard evidence, the thorny problem of variant Creutzfeldt-Jakob disease is it. And the more costly the implications of such evidence, the greater the likelihood it will be challenged. Every hard-won scrap of information we have about vCJD, its derivation from bovine spongiform encephalopathy and its mechanism of transmission has been disputed in one quarter or another. As if inured to that fact, the Lancet, publishing an early report on the experimental sheep-to-sheep transmission of BSE through transfused blood,1 simultaneously ran an editorial that criticized the authors and editors for publishing the report. The objection was twofold: first, the results were preliminary (only 1 of 19 transfused animals had become infected, and the study was not complete); second, the results would not change anything, unless one were willing “to shut down the whole UK blood-donor system.”2

With respect, we disagree. Too often, minority views and marginal reports that later turn out to be true have been suppressed by government agencies and their expert advisory committees. The contamination of the Canadian blood supply with HIV and hepatitis C comes immediately to mind.3 Even when a change in policy is unnecessary or impossible, there is still a need for disclosure and discussion.4

The recently released report of the “Inquiry into BSE and variant CJD in the United Kingdom” criticizes, among others, the UK Ministry of Agriculture, Fisheries and Food for imposing an embargo on releasing the finding, in 1987, that some cattle in the UK were infected with BSE.5 Lord Phillips, chair of the inquiry, was also critical of the government, expert committees and officials such as Sir Donald Acheson, chief medical officer at the time, for not fully informing the public of possible risk.

Public officials, particularly those in ministries of agriculture, fisheries and food, are caught between the rock of potential economic loss and the hard duty of ensuring public safety. Protecting the public requires that the public be fully informed; protecting industry, that the public be kept in the dark until the evidence is substantial. Officials and expert committees for health ministries and other public agencies such as the Canadian Blood Services and Hema-Québec are also caught, but the rocks and hard places are, well, softer: there is no pressure to protect private industry. Yet, as the Krever inquiry in Canada and the BSE epidemic in the UK show, public officials tend to believe that a public fully informed of possible dangers will overreact. As the Phillips report comments, expert committees “followed an approach whose object was sedation.” We fully agree with the decision of the Lancet to publish the sheep case report and with the testimony to the BSE Inquiry of Sheila McKechnie, director of of the UK Consumers' Association, that “There is nothing more nanny-ish than withholding information from people on the ground that they may react irrationally to that information.”5 — CMAJ