We have designed this project based on existing research that cuts across disciplinary boundaries. 

Studies in the domain of the sociology of health and illness show that people with health conditions derived from gene mutations (e.g. most rare diseases and all hereditary cancer syndromes) are often more used than others to seek health information via non-traditional routes, because data relevant to their conditions is hardly available via traditional ones (e.g., via general practitioners).  These information journeys often become part of everyday practices and influence the way people see themselves, both in relation to their expertise of health data and information and in relation to others who have to deal with this information and data, e.g., their family and health professionals. These journeys also lead to the forming of more or less formal communities of patients - or previvors in the case of hereditary cancer syndromes - on digital media.

Digital media research shows that social media are increasingly becoming ubiquitous - essential and mundane infrastructures in our everyday life. As most mainstream social media are commercially owned and regulated, this also means that the structure, design and norms designed by profit-driven companies are increasingly influential to people's life: to how they present and represent themselves and the issues they care for but also to the information they learn, see, and share. 

This project is grounded in these very premises and aims to bring together understandings of genetics with concepts from the sociology of health and illness and digital media research. If you want to read amore about the key debates and ideas that we are using to develop our study, have a look at the resources linked below in relation to "genetic risk", "lay expertise", "social media" and "digital and illness identities".