Early risk and cancer detection are at the heart of Europe's strategy in the fight against cancer. The belief underlying these efforts isthat if we can detect and treat cancer as early as possible, then we can prevent its progression towards metastasic of fatal disease. However, many types of cancer follow profoundly heterogeneous trajectories: some may indeed become very severe if not treated, while others may remain stable or regress on their own. In order to circumvent ethical issues related to overdiagnosis and overtreatment, active surveillance is often selected in order to assess through time the potential evolution of the disease towards more severe stages. The population of persons who are placed under active surveillance is thus rapidly growing through the current push for early risk and cancer detection and the accessibility of new diagnostic technologies. These “patients-in-waiting" live with great uncertainty, not knowing if and when they will ever need to be treated for cancer. The "invisibility" of this population withrepresents a significant public health challenge, as concerned patients' needs and distress may remain unseen, disregarded or dismissed.
SEASOn’s main goal is to co-construct an ethical framework to address issues raised by the development of early risk and cancer detection as well as the needs and vulnerability of patients-in-waiting under active surveillance in oncology. Based on field work to gather qualitative data (semi-structured interviews and ethnographic observations) and on participatory methodologies (public and patient involvement, structured dialogues), SEASOn will (1) evaluate how oncologists introduce and explain the need for active surveillance to concerned patients; (2) analyse concerned patients’ experiences, expectations and needs surrounding active surveillance; and (3) co-construct an ethical framework with concerned stakeholders and highlight priorities for the improvement of surveillance pathways.
