The recent roll out of whole genome sequencing initiatives - like the NHS Genomic Medicine Service in the UK - will soon bring a massive growth in the number of healthy people identified as having a genetic predisposition to cancer (i.e., a hereditary cancer condition). While obviously impacting the life of those directly involved, this also causes major concerns for professionals and policy. 

Against this background, social media platforms have become invaluable for patients struggling to access health information offline and a key resource to talk and learn about hereditary cancer. Yet, little is known about how these platforms influence the experiences and understandings of health and illness in healthy people who are expecting to become cancer patients and shape their life around - or despite - this expectation. 

This project focuses on 'previvorship', or the condition of coping with a genetic predisposition to cancer prior to cancer occurrence. It explores if, how and to what extent the governance and design of western social media platforms - with a specific focus on privacy, moderation and algorithmic recommendation - shape the way previvorship is lived, performed and understood. 

We specifically focus on 1) the way self-awareness related to hereditary cancer conditions emerges at the intersection of specific information needs, user practices and platform infrastructures and 2) the extent to which these performances intertwine with the emergence of lay and expert understandings of cancer genetic risk.