2 The concept of informed choice during the screening process

Screening involves difficult decisions both for individuals and for society regarding the benefits, harms, costs and ethical implications of screening. Many advocate various methods to improve informed choice as a panacea for these challenging decisions. However, informed choice, like any other concept, both has fitting applications as well as limitations with potential for over-/misuse. In this workshop, we want to debate the potential limitations of the informed choice in the context of screening, with emphasis on overdiagnosis. Using four cases from our own research, we would like to engage the participants to reflect on the concept and practice of the informed consent at different time points in the process from the establishment of the national screening programmes to the individual choices about participation. The workshop will begin by the end, by introducing a research project concerning why some participants in colorectal cancer screening choose not to undergo colonoscopy following a positive test result. What is of importance for these participants and what is the role of informed consent in this context? Going backwards in the screening process, we will introduce two research projects emphasizing the pitfalls of current information materials and communication strategies about screening. What happens with citizens’ interpretation of screening when they receive information about screening which dissonate with their previous knowledge, assumptions and emotions related to screening? And further, what is the role of nudging in current information material and how does it conflict with the informed choice? Stepping further back in the screening process, we will introduce the potential roles of citizen juries in the context of the establishment of screening programmes and decision making. Turning back to the beginning, we will finish by debating the informed choice, as a concept. What constitutes an informed choice to whom and how to support people in balancing the different outcomes and preferences to reach a decision without coercing them in a given direction? Informed choice is often implicitly seen as a right for autonomous individuals to make a decision about their own health. Conversely, we want to discuss the balance between informed choice as a right or as requirement.