Information about screening – is it to achieve high uptake or to ensure informed choice?

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Abstract
For many years, public information about screening has been aimed at achieving high uptake but concerns are now being raised about this approach. There are several problems that have prompted these concerns. By giving information that emphasizes only the positive aspects of screening the autonomy of individuals is ignored, individuals feel angry when they perceive that they are let down by screening, symptoms may be disregarded because of the belief that screening gives full protection, health service staff carry the blame for problems that are in fact inherent in screening, and sound debate about policy and investment in screening is hampered by misunderstanding about the benefits and costs of screening. If we adopt instead an approach that makes explicit the limitations and adverse effects then a different set of problems will be encountered. We risk a reduction in uptake of screening and thus population benefits may reduce, those most likely to be deterred from accepting screening may be the most socially disadvantaged, there will be a cost in terms of staff time to explain screening more fully to participants, and cost-effectiveness could be reduced if uptake falls so low as to make services barely viable. In the UK current General Medical Council (GMC) advice1 to doctors about informed consent for screening makes it clear that full information should be given. The UK National Screening Committee has also signalled the need for a changed approach to information2 giving so that individuals are offered a choice based on appreciation of risks and benefits. It will take time for this approach to be fully reflected across the full range of UK screening programmes. New national information will be needed to assist staff in giving full information, and some aspects of policy, such as screening coverage targets for Health Authorities and General Practitioners, will need to be altered. There are many questions still to be answered about the kind of information needed to achieve informed participation, and about how it should be framed and communicated. These questions can begin to be addressed when there is clarity at national level about the purpose of information about screening.