The Googlization of Health Research: From Disruptive Innovation to Disruptive Ethics

Abstract

Consumer-oriented mobile technologies offer new ways of capturing multidimensional health data, and are increasingly seen as facilitators of medical research. This has opened the way for large consumer tech companies, like Apple, Google, Amazon and Facebook, to enter the space of health research, offering new methods for collecting, storing and analyzing health data. While these developments are often portrayed as 'disrupting' research in beneficial ways, they also raise many ethical issues. These can be organized into three clusters: questions concerning the quality of research; privacy/informed consent; and new power asymmetries based on access to data and control over technological infrastructures. I argue that this last cluster, insofar as it may affect future research agendas, deserves more critical attention.

Big Data-Driven Health Surveillance

“…While rejecting techno-deterministic as well as substantive views 11 , I unpack interdependencies between technological developments, corporate data practices and big datadriven health research, specifically in the field of public health surveillance. In consequence, this book inevitably grapples with emerging power asymmetries (Sharon 2016;Andrejevic 2014) and questions of data (in-)justice (Taylor 2017;Dencik, Hintz and Cable 2016;Heeks and Renken 2016) crucial to CDS.…”

“…on average younger or above average physically active. This leads to selection (sampling) bias, also described as population bias (Ruths and Pfeffer 2014;Sharon 2016). Such bias implies that generalising claims based on big data, typically underlined with reference to the popularity of digital devices/platforms, should be treated with caution: the more exclusive (e.g.…”

“…Regarding privately held or mediated databases, Sharon (2016) observes that '[…] public money is channelled, indirectly or directly, to their development, as has been the case with 23andMe, which recently secured a US$1.4 million research grant from the NIH to expand its database, and with recent National Cancer Institute funding of Google and Amazon run genome clouds' (Sharon 2016, 569). These developments are part of the emerging data, analytics, skills and infrastructure asymmetries depicted in Chapter 3.…”

“…Sharon 2016;Harris, Kelly and Wyatt 2016;Van Dijck 2014). As Van Dijck observes, the commercial utilisation of big data has been accompanied by a '[…] gradual normalization of datafication as a new paradigm in science and society ' (2014, 198).…”

“…Calling attention to seminal changes emerging in research connected to global tech corporations, Sharon (2016) argues that since unfolding ' […] power asymmetries may affect the shaping of future research agendas, they deserve greater critical attention from medical researchers, ethicists and policy makers than is currently the case. ' (564).…”