The aim of the Digital Good project was to research the ethical and societal impacts of the increased presence of Big Tech companies in the health and medical sector, what we also called the “Googlization of health”. We focussed on several case studies, such as:
- the “Personalized Parkinson’s Project”, a collaboration between a university medical centre in the Netherlands and Verily, a subsidiary of Alphabet;
- Google and Apple’s development of an API for digital contact tracing during the COVID-19 pandemic;
- The use of Apple’s “ResearchKit” software for remote clinical studies by various medical researchers in the Netherlands and in the United States;
- Lobbying and other involvement on the part of tech companies (e.g. Microsoft and Huawei) in the development of the European Commission’s regulation on the European Health Data Space;
- Verily and Apple’s work on the development of a digital biomarker for Parkinson’s Disease.
Results
Our main findings have been:
- The presence of Big Tech in sectors such as health and medicine tends to be critically evaluated in terms of either privacy and data protection risks or platform and market power risks. We identified a number of risks that are not captured by these dominant critical framings. These include non-equitable returns (i.e., exploitation of public data without fair compensation); a gradual reshaping of the health sector in line with the interests and practices of tech actors; and the creation of new dependencies on tech corporations for the provision of health and medicine. See:
- This means that existing conceptual and regulatory frameworks for assessing the growing involvement of Big Tech in health and medicine, such as the General Data Protection Regulation (focus on data protection), or platform power critiques (focus on the market power of Big Tech) are insufficient for grasping the breadth of impact of Big Tech’s encroachment into this sector. In particular, we found that the focus on privacy, by regulators, professionals and even the broader public, may facilitate Big Tech’s increasing presence in health and medicine; whereby as long as tech corporations comply with privacy laws, they are at liberty to expand in the sector. See:
- We thus developed a novel conceptual framework – sphere transgressions – that can account for these risks. The framework is valuable for identifying, articulating and making sense of novel developments in all public sectors into which Big Tech companies are expanding, and which puts the relative autonomy and integrity of these sectors at risk. See:
- We have also found that it is too simple to blame Big Tech’s increased influence and profit motivations for the potential harms of the Googlization of health phenomenon. Importantly, policy makers and medical sector professionals play an important role in this phenomenon, by welcoming or even soliciting the expertise of tech actors. This can be seen as part of a general societal discourse that views digitalization as a solution to societal needs, such as healthcare provision and advances in medical research. See:
- We have thus paid specific attention to “technosolutionism” – the belief that complex societal problems have simple technological solutions – as part and parcel of Big Tech expansionism into public sectors such as health. We theorized technosolutionism as a mechanism, identifying how it works and what specific harms it raises when applied in public sectors. We further found that design ethics, which can be considered the dominant form of technology ethics today, is not well place to technosolutionism and its harms.
- Siffels & Sharon (under review). Where technology leads, the problems follow: Technosolutionism and the Dutch contact tracing app. Philosophy & Technology.
A novel empirical-philosophical methodology: A normative pragmatics of justice
In the Digital Good project we developed a novel empirical-philosophical methodology to study the ethical/societal impacts of Big Tech’s increasing presence in health and medicine. Empirical philosophy can be said to be the use of ethnographic methods, such as interviewing and participant observation, to study philosophical questions, such as what is good or true, in practice. The approach itself is not new but in our project we broadened this approach to include an evaluative component which tends to be lacking in empirical philosophy as a predominantly descriptive form of enquiry. Empirical philosophy is often critical of theoretical moral philosophy for being too detached from the everyday morality of people, and seeks to step out of the “ivory tower” to identify the multiplicity of values and normativities that people enact in practice. However, we believe that the commitment to describing normativities, while very valuable, is also limiting – certainly when the subject matter is Big Tech’s influence on healthcare and medicine. In the project we thus combined the descriptive component of empirical philosophy with the normative component of moral philosophy, to achieve what we have called a “normative pragmatics of justice”. More speficially, we used the framework of “justification analysis” developed by the sociologists Boltanski and Thévenot, for the empirical/descriptive dimension of our research, and Walzer’s framework of “spheres of justice” for the normative/evaluative one. Explanations of the approach and its applications can be seen in:
- Siffels, Sharon and Hoffman (2021). The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research. Humanities and Social Sciences Communications. https://doi.org/10.1057/s41599-021-00979-4
- Siffels (2021). Beyond privacy vs. health: A justification analysis of the contact-tracing apps debate in the Netherlands. Ethics and Information Technology. https://doi.org/10.1007/s10676-020-09555-x
- Sharon (2021) From hostile worlds to multiple spheres: towards a normative pragmatics of justice for the Googlization of health. Medicine, Healthcare and Philosophy. https://doi.org/10.1007/s11019-021-10006-7
Sphere Transgression Watch
In 2022 we launched Sphere Transgression Watch, a website that translates the conceptual framework of sphere transgressions into a visual, interactive digital tool, which tracks the presence of nine different tech corporations in various societal sectors over time (see more below). The development of the website was a fruitful interdisciplinary collaboration between our team of philosophers, social scientists, computer scientists and interaction designers. This is an outreach tool that seeks to make data about Big Tech’s expansion into various societal spheres easily accessible and tangible in order to raise awareness about this phenomenon and facilitate research about it. See:
- Stevens, Sharon, van Gastel, Hoffman, Kraaijeveld, & Siffels (2022). Sphere transgression watch. Distributed by iHub.
- Fahimi et al. (forthcoming). In/visibilities in Data Studies: Methods, Tools, and Interventions. In Jarke and Bates (eds.) Dialogues in Data Power: Shifting Response-abilities in a Datafied World. Bristol University Press.
