Introduction to the Special Theme: The expansion of the health data ecosystem – Rethinking data ethics and governance

Abstract

As in other domains, digital data are taking on an ever more central role in health and medicine today. And as it has in other domains, ‘datafication’ is contributing to a re-configuration of health and medicine, prompting its expansion to include new spaces, new practices, new techniques and new actors. Indeed, possibilities to quantify and ‘datafy’ areas of life that have not traditionally been considered the remit of biomedicine – such as sleep, ageing and emotions – and activities that have not traditionally been considered markers of health and disease – such as a person’s consumption patterns, her social media activity or her dietary habits – coupled with the promise of linking these heterogeneous datasets to glean medical insights, have contributed to a redefinition of almost any data as health-related data (Lucivero and Prainsack, 2015; Weber et al., 2014). Increasingly, these new types of data are being generated outside the traditional spaces of medicine, as people go about their daily lives interacting with consumer mobile devices. Similarly, the technological tools needed to capture, store, analyze and manage the flow of these data, from wearables and smart phones to cloud platforms and machine learning, increasingly rely on infrastructure and know-how that lie beyond the scope of traditional medical systems and scientists, amongst data scientists and information and communication technologies specialists. Moreover, new stakeholders are cropping up in these quasi-medical yet still undomesticated territories. On one end of the spectrum, individuals who generate health data as they track and monitor medical conditions, well-being, physical activity, or air quality, are both solicited as research participants and are making demands on researchers to utilize their personal health data (Health Data Exploration Project, 2014). On the other end of the spectrum, consumer technology corporations such as Apple and Google are reinventing themselves as obligatory passage points for dataintensive precision medicine (Sharon, 2016). And somewhere in between, not-for-profit organizations, such as Sage Bionetworks and OpenHumans.org, are positioning themselves as mediators in this ecosystem in formation, between the medical research community, individual and collective generators of data and technology developers. As proponents uphold, this expansion and decentralization of the health data ecosystem is promising, both in terms of the potential to advance data-driven research and healthcare, and in terms of rendering research more inclusive and more meaningful for participants (Shen, 2015; Topol, 2015). But, as critical scholars of science and technology have consistently shown, a fuller grasp of our technological present must always include the far-reaching, unexpected and sometimes deleterious social, political and cultural effects of discourses of scientific progress and technologically enabled democratization and participation. In recent years, such critical scholarship has been particularly wary of the new power asymmetries that datafication contributes to. Rather than levelling power relations, critics observe, these are being redrawn along new digital divides based on data ownership or access, control over digital infrastructures and new types of computational expertise, where those who generate data, especially citizens, patients and consumers, are positioned on the losing side of the on-going extraction and scramble for the world’s data driven by state