Living Data: Making Sense of Health Biosensors
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 direct-to-consumer genetic testing. Two PhD students (now completed) have been undertaking ethnographic studies of these areas: Mette Kragh-Furbo investigated genetic testing, and Joann Wilkinson researched reproductive biosensors, particularly ovulation sensing.
We have received funding from Intel Labs and its ‘Biosensors in Everyday Life Programme’ led by Dr Dawn Nafus. The project was funded until the end of April 2015, but the research continues through publications, further projects and research activities.
“Our Bodies, Our data”, Citizens’ Panel
We held a two-day Citizens’ Panel in May 2013 at the Storey Institute Lancaster with 15 participants and four expert witnesses. The panel debated and discussed how people collect and use biological information about their bodies to make health-related decisions. We asked: How might this change in the future? No previous knowledge of biosensing was necessary as we were interested in the panel’s day-to-day lived experiences and views.
After questioning expert witnesses and debating the design, development and use of new biosensors, the Panel identified a ‘triangular network’ that they believed should be involved in the development, design and marketing of these products: technology companies, public bodies (including regulators, Government and the NHS) and civil society organisations (including patient groups, charities, campaigning groups and other non-government organisations). Panel members formulated a set of recommendations for each of these groups of actors.
Access the report here: ‘Our Bodies Our Data’ Citizens panel report
To facilitate discussion, we had prepared two scenarios relating to health bio-sensing: one on direct-to-consumer genetic tests and another on fertility monitoring devices. Access the scenarios here: Citizens’ Panel Scenarios. The visual for the presentation is here.
The panel was facilitated by Dr Sue Weldon