Implementing honesty about screening using community informed consent

Editor—We support Raffle's suggestion that honesty about screening is the best policy.¹ But how can that be achieved? Practitioners and planners complain that individual informed consent to screening is too time consuming: the provision of information and the necessary discussion and reflection on it require considerable effort, time, and skill.

We have recently suggested a community informed consent process: a survey to establish the distribution of preferences among fully informed people potentially to be screened—for example, from a random sample of the target population to whom screening will be offered.²

Firstly, if most of the target population think that the harms of screening outweigh the benefits, there is no need to consider further whether screening should be provided.

Secondly, if most of the target population think that the benefits of screening outweigh the harms, screening can be offered, subject to an acceptable cost effectiveness ratio. People should be informed that a representative sample of people like them who have been given detailed information about the screening process thought that the benefits outweighed the disadvantages. For many, that may be sufficient for them to decide about screening. Some may still want more information, which should then be provided.

Finally, if the target population is divided about benefits versus harms, then there is a need for individualised decisions.

The first step is providing good evidence about all the effects of screening on the basis of randomised trials. We do not see it as a dilemma if people are deterred from effective screening when they know its consequences. If they are truly well informed, that represents their preferences and reflects how they trade the benefits against the harms. Rather, the dilemma is how to ensure that people indeed have sufficient information to make the choice. The community informed consent process represents a practical solution. Only when adequate community surveys of preferences show that most of those who might be screened would choose to be screened does it seem ethical to actively promote screening without detailed individual consent.