Abstract Summary
Early detection of disease risk challenges people to make sense of their ‘being at risk’. Beyond understanding statistics, risk literacy involves critically appraising biomedical information, interpreting it against one’s individual lifeworld. Attention to people’s narratives constitutes an important resource for reclaiming epistemic power in a data-driven and biomedically dominated discourse.
Abstract :
In the face of disease risk prediction in a biomedical context, people are challenged to make meaning of their individual risk. Risk literacy is considered as the correct understanding of one’s probability to develop a certain condition, and as an important prerequisite for decision-making regarding early testing and preventive intervention. However, statistics do not take into account the complexity of people’s identity and their lifeworlds. Narrative interviews with persons ‘at risk’ in four clinical fields (hereditary breast and ovarian cancer, coronary heart disease, Alzheimer’s dementia, and psychosis) illustrate the different ways of interpreting biomedical risk knowledge, experiencing the condition of ‘being at risk’, and integrating it into one’s life narrative. In the face of a (potentially) threatening future, a delicate balance of thoughts, feelings, and action needs to be constructed to maintain and re-gain agency in the present. The interviewees’ narratives, and an analysis of their metaphorical concepts, allow insight into individual strategies to negotiate controllability – a complex trade-off between guilt and responsibility, zest for life, identity, and trust. Beyond understanding statistics, risk literacy therefore involves the competence – and the courage – to critically appraise biomedical information and recommendation concerning a person’s disease risk. Drawing on these insights, implications for risk communication and decision-making with respect to early detection and prevention will be discussed. I argue that paying attention to people’s language and narratives is essential for opening up definitional spaces in the context of risk prediction, and constitutes an essential resource for persons ‘at risk’, allowing them to reclaim epistemic power in a data-driven and biomedically dominated discourse.
