People increasingly care about personal health-related data. Caught between the growing responsibilisation of citizens within public health and clinical medicine’s continuing focus on individual diagnosis and treatment, many individuals seek ways of accessing, understanding and sharing data about their own bodies. But as biosensors move data outside clinical, laboratory/ institutional settings, how will they make sense of this data?
Making sense of and caring for such data occurs via forms of collecting, exchange, communication, analysis and interpretation that criss-cross people, institutions, other measurements, monitoring and media (mass and social media, paper, screens). When the data concerns significant life changes e.g. pregnancy and serious illness, the social life of biosensor data and health-related information becomes highly fraught. People’s relation to medical expertise/ health systems are profoundly challenged as access to, and control over data shifts. Problems of interpretation, understanding, judgment, trust and confidentiality occur. In many cases people turn to health advocacy groups for guidance in interpreting data and make within-group comparisons. Others use social networking sites/online information to interpret personal data and make decisions about what to do, for themselves and others (e.g. present/future children). Such practices create alternative worlds of knowledge/ knowledge practices not necessarily sanctioned by medical or scientific expertise; worlds of health awareness that cannot be separated from other concerns and practices of family, social life, work, leisure, media and consumption.
Our research contrasts two expanding areas of health concern: conception and pregnancy, and personal genetic testing. Two PhD students have been undertaking ethnographic studies of these areas: Mette Kragh-Furbo investigated direct-to-consumer genetic testing, and Joann Wilkinson researched reproductive biosensors, particularly ovulation sensing.
In May 2013, we ran a Citizen's Panel to discuss preliminary findings from the two PhD projects and to explore the social implications of contemporary and future biosensing technologies in the areas of personalised genetic testing and reproduction. For a copy of the report, see link: https://livingdata.files.wordpress.com/2014/04/our-bodies-our-data-citizens-panel-report.pdf. For more information about the project, please contact Maggie Mort (m.mort@lancaster.ac.uk).
The project was funded until the end of April 2015, but the research continues through publications, further projects and research activities. For further details, please see the Living Data website: https://livingdata.wordpress.com/
