The furore

These recommendations, which were met with surprise and considerable hostility, caused a good deal of controversy in both the scientific and lay press and inevitably the debate entered the political arena. In February 1997 the US Senate passed a resolution urging the NCI to recommend regular mammograms for women aged 40-49, and the Director was urged to reject the consensus panel's conclusions. In turn the Director asked for a recommendation from the National Cancer Advisory Board. Yet even whilst the subcommittee assigned to tackle the issue was considering the facts, the political pressure mounted to the point where it was made clear that decisions on the budget for the National Institutes for Health and the NCI would be postponed until (and by implication depended on) the NCI's final recommendation was issued. In March, a statement was issued by the NCI that had been agreed seventeen to one by the Board that women aged 40-49 at normal risk should be screened every one to two years. [Interestingly, the lone voice of opposition was from a leading scientist in the field of clinical trials, herself a breast cancer survivor.] A joint statement was then released by the NCI and the American Cancer Society stating that 'mammography screening of women in their 40s is beneficial and supportable by the current scientific evidence' thereby completely at odds with the original panel recommendation. Statements of approval by many politicians including the President followed quickly.

Of course clinical research cannot operate in a vacuum and everyone (even politicians) is entitled to their opinion and input. Society should be able to reject the recommendations of the experts. However, the mammography example may highlight the problem that a little knowledge can be a bad thing. The public may have been less aware of the issues than they thought they were and much of what was involved was in fact not well understood. The controversy needs to be seen in the context that the public health message of early detection of cancer is one that has gained widespread acceptance. The prevailing attitude is therefore that screening must be a good thing. When the issues were discussed it was probably not clear to most members of the public that, although there might be a significant reduction in the relative risk of mortality, in absolute terms the potential number of premature deaths avoided is very small - a high proportion of very little is still very little. It emphasises the need for a much better level of public education, and for clear explanation of results to non-researchers to enable a fuller understanding of the facts. Whether or not such an approach would ever circumvent the political coercion that was exerted in this case is of course another question.

There is a need for public education at all levels including specific training for patients advocates and representatives, such as project LEAD, general education in schools and colleges and more general publicity campaigns. There is also a need to work with the press on specific issues to try to ensure that reportage is fair and unbiased. Such public education is a specialist area and detailed discussion is outside the scope of this chapter. However, many of those involved with trials must be ready and willing to take part in open public debate. We must be ready to face the pressures of the press interview, to explain our science to the public and become involved in a public education process.

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