The ‘Social Life’ of Health Data

What happens when health data moves outside the clinic and the academic lab into domestic, online and commercial milieus? Such movements are becoming increasingly prevalent through new technologies and health services, and yet they raise a number of important questions. How do people care for health-related data? How can we understand the sometimes complex forms of data collection, exchange, analysis and interpretation that involve people, institutions, multiple forms of measurement and diverse media? How are people’s relations to medical expertise and health systems challenged by changes in access to and control over data? 

These are among the questions that our PhD research, done in collaboration with Dr Celia Roberts, Professors Adrian Mackenzie and Maggie Mort, is investigating.

Our project, ‘Living Data: Making sense of health biosensing’ is supported by funding from the Intel Labs research programme ‘Biosensors in Everyday Life’ (2011-2013) led by anthropologist Dr Dawn Nafus. Biosensing refers to the way in which people use technologies to track or measure any aspect of their body for example, the use of a pedometer to count the number of steps taken on a daily walk or a glucose meter for monitoring glucose levels in the blood. In the project ‘Living Data’ we look at biosensing in two specific areas – consumer genomics and ovulation monitoring – and we conduct ethnographic studies of how people care for health-related data in these fields.    

Although both consumer genomics and ovulation biosensing have contrasting dynamics, together they highlight important issues related to the concept of ‘living data’ understood here as data which moves, does or performs. Health-related data practices create alternative worlds of knowledge that are not necessarily sanctioned by medical or scientific expertise. They also create worlds of health awareness that cannot be separated from other concerns and practices of family, social life, work, leisure, media and consumption. In this way, the circulation of health-related data outside of clinics and labs is changing. In our work, we look at how health-related data is taken up by individuals outside of formal institutions and we consider the consequences of this process. 

For example, genetic data is no longer limited to clinical settings. Forms of DIY genetic testing offered by companies such as 23andMe provide opportunities for people to not only collect their own DNA sample and send it in for analysis, but also to analyse the results through online portals. Yet these alternative ways of engaging with genetic data have sparked concerns contributing to the withdrawal of parts of 23andMe’s DIY kits, as well as the creation of DIY genetic testing guidelines.

Our work contributes to these discussions by exploring the ‘social life’ of health data. In the case of consumer genomics, we explore how movement shapes and forms part of different genetic data practices, for example how saliva ‘translates’ or becomes genetic data. Within the field of ovulation biosensing the social life of data also involves movement. We focus on what happens when data moves from online forums where people discuss fertility and pregnancy into General Practice and then back again to the forum; how does data itself change and how does it gain or lose authority as it moves through different contexts?  While this movement of data can seem banal, it has an important role in shaping ideas about fertility and the reproductive body. For example, through measuring, monitoring and testing for ovulation every month, women experience trying for a baby as complex and scientific yet paradoxically fertility becomes more elusive and mysterious.  The social life and movements of data in these ways have important social consequences.

Our research has developed through engagement with both non-academic and academic groups. We worked with social scientists and engineers at Intel Labs in Oregon for a 6-week period, learning about their research projects and obtaining insights into the workings of a research lab in a large corporate organisation. During this time, we contributed to discussions on technology and social science from each of our areas of expertise, while also exploring how these areas criss-cross within the field of health-related biosensing.

Another important part of our work has involved organising and undertaking two citizens’ panels on health biosensors.  One of the citizens’ panels was a participatory inquiry into the topics of personal genomics and home reproductive technologies entitled ‘Our Bodies Our Selves’. We invited 15 participants and 4 expert witnesses to learn about the technologies we are researching, and provided an opportunity for the participants, who often did not know about the technologies in detail, to ask critical questions and respond to the social, ethical and technical questions they provoke.

The citizens’ panel offered a legitimate space within which to identify issues for debate and to offer recommendations to key actors involved in the development, marketing and regulation and consequences of those technologies. A key recommendation was that key actors in the development of technologies should be more upfront about data ambiguities, acknowledging and providing guidance on them.  Alongside our ethnographic work, which includes online observations and interviews with manufacturers and users of these technologies, the Citizens’ Panels have helped us to better understand the complex questions surrounding health data. In addition to this, by participating in such rich public debates and reporting our findings back to the groups involved, we hope to direct attention to the complex social challenges related to health biosensing.

- By Mette Kragh-Furbo and Joann Wilkinson