Periodic Reporting for period 4 - Digital Good (The Digital Disruption of Health Research and the Common Good. An Empirical-Philosophical Study)
Période du rapport: 2023-07-01 au 2024-06-30
In recent years, Big Tech corporations including Google, Apple, Facebook, Amazon and Microsoft, have moved into the sector of health and medicine. This "Googlization of health" may lead to important advances in health and medicine, but it also raises significant risks. While these actors are experts in data collection and digitalization, which can be very valuable for the future of health and medicine, they are not health and medical experts. Moreover, they are private, commercial actors who are not accountable in the way that public sector actors are. This project researches the impacts of the Googlization of health on the sector of health and medicine and society at large: Will these companies become important gatekeepers of valuable medical datasets? How will privacy be dealt with? What role will they begin to play in setting research agendas? What kinds of clashes of expertise will unfold between technical and medical expertise? We will explore the Googlization of health as a phenomenon by studying several collaborations between public research institutions and these companies in Europe and in the United States. Using an empirical philosophical approach, we investigate which values and norms are foregrounded in these collaborations, and which ones are being backgrounded. For example, is technical efficiency being promoted over empathetic care? Is optimizing health being promoted over inclusivity and access to health services? We will use these findings to develop a framework for collaboration between public research institutions and these companies that will lay down conditions for ensuring that sectoral and societal values are protected.
In order to study the ethical and societal impacts of the increased presence of Big Tech companies in health and medicine, we focussed on several case studies. These included:
• 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.
Our main findings have been:
1) 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.
2) 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.
3) 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.
4) 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.
5) 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.
• 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.
Our main findings have been:
1) 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.
2) 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.
3) 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.
4) 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.
5) 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.
The project makes three considerable contributions beyond the state of the art which can be described as empirical, conceptual and methodological
1) empirical -- Sphere Transgression Watch public archive
In 2022 we launched Sphere Transgression Watch (https://www.sphere-transgression-watch.org(s’ouvre dans une nouvelle fenêtre)) a website and interactive digital tool, which tracks the presence of nine different tech corporations in various societal sectors over time, not just in health and medicine, but also in education, public administration, agriculture, science, law, politics and others. The tool makes information about Big Tech’s expansion into various societal spheres easily accessible. Users of the tool can scroll through the timeline and see the influence of tech corporations in particular societal spheres growing. They can also click on a particular sphere and gain access to a rich archive of newspaper articles, blogs and information from company websites that can be used for research purposes.
2) conceptual -- sphere transgressions framework
This is a groundbreaking conceptual contribution to the study of digital health and the digitalization of society more broadly. Originally thought of as a means of studying the involvement of Big Tech in health and medicine, the way it can help identify risks of “transgressions” at both sectoral and cross-sectoral levels can be applied both to the other sectors – where Big Tech actors are becoming prominent (such as education, transportation, media, urban planning) – but also to digitalization (absent Big Tech) more broadly.
3) methodological -- a normative pragmatics of justice
We developed a novel empirical-philosophical methodology to study the ethical/societal impacts of Big Tech’s increasing presence in health and medicine. We 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.
1) empirical -- Sphere Transgression Watch public archive
In 2022 we launched Sphere Transgression Watch (https://www.sphere-transgression-watch.org(s’ouvre dans une nouvelle fenêtre)) a website and interactive digital tool, which tracks the presence of nine different tech corporations in various societal sectors over time, not just in health and medicine, but also in education, public administration, agriculture, science, law, politics and others. The tool makes information about Big Tech’s expansion into various societal spheres easily accessible. Users of the tool can scroll through the timeline and see the influence of tech corporations in particular societal spheres growing. They can also click on a particular sphere and gain access to a rich archive of newspaper articles, blogs and information from company websites that can be used for research purposes.
2) conceptual -- sphere transgressions framework
This is a groundbreaking conceptual contribution to the study of digital health and the digitalization of society more broadly. Originally thought of as a means of studying the involvement of Big Tech in health and medicine, the way it can help identify risks of “transgressions” at both sectoral and cross-sectoral levels can be applied both to the other sectors – where Big Tech actors are becoming prominent (such as education, transportation, media, urban planning) – but also to digitalization (absent Big Tech) more broadly.
3) methodological -- a normative pragmatics of justice
We developed a novel empirical-philosophical methodology to study the ethical/societal impacts of Big Tech’s increasing presence in health and medicine. We 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.