Informed Decision-Making and Capabilities in Population-based Cancer Screening.

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy-as a right and as an ideal-we describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so.

Recent insights into decision-making and their implications for informed consent.

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids (PDAs) are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed.

Competence assessment in minors, illustrated by the case of bariatric surgery for morbidly obese children.

Clinicians have to assess children's competence frequently. In order to do justice to children who are competent to make decisions and to protect incompetent children, valid assessment is essential. We address this issue by using bariatric surgery for morbidly obese minors as a case study. Our previous research indicated that opponents of bariatric surgery tend to be sceptical of the competence of adolescents to consent and inclined to set more stringent standards than proponents. Furthermore, there is the concern that minors wanting surgery are less able to make an autonomous decision than minors who do not wish to undergo surgery. Hence, few patients may be qualified as eligible. We argue for a risk-related standard, so that concerns are met, while at the same time preventing to set the bar too high, excluding paediatric patients who are most likely to benefit from surgery. This standard is also applicable in gastroenterology practice.