Just data? Solidarity and justice in data-driven medicine

Abstract

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of datadriven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could-especially considering current developments in big data and artificial intelligence-compromise the right by leading to injustices and affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards outputorientation in governance and policy.

Healthcare Activism, Marketization, and the Collective Good

“…In these cases, activists advocate for different versions and visions of what I call the "collective good"-goods where individual and communal (or private and public) value and economic and moral reasoning are intrinsically intertwined. The term collective good, which I put forward in this volume, points to the entanglements and overlaps between "rights" and "goods" from a moral philosophical perspective (Hummel and Braun 2020). It also highlights that the way collective goods are construed depends on how the community advocating for it is defined (Widdows and Cordell 2011), and of course on the practices that a particular community engages in and the values it holds.…”

“…These would feed a marketplace where knowledge is generated and accumulated "not to create more knowledge available for all, but instead the right kind of knowledge selected for its usefulness to (because demanded by) well-heeled patrons" (2018, 94). Thus, many critical voices argue that the personalization and datafication of biomedicine leads to an increase in private goods rather than collective ones, even if it is individuals' and collectives' data that feed this particular medical economy (Hummel and Braun 2020;Geiger and Gross 2021). This may even be the case when private corporations cooperate with public bodies in so-called public-private partnership arrangements, such as public-private genomics initiatives where the private entity gains property rights over large and publicly sourced accumulations of individuals' DNA data (Galasso and Geiger 2021).…”

Applications of Artificial Intelligence (AI) in healthcare: A review

“…All of this big data is being compiled and linked to produce a more predictive picture of our health or medical status. Data-driven medicine has the potential to improve not just the precision and agility of genetic disease detection, but also to open the door to individualized medical treatments (Hummel & Braun, 2020).…”

Zwischen neuer Solidarität und Entsolidarisierung – Der Sozialstaat angesichts des digitalen Wandels

“…B. Bonuspunkte für die Mitgliedschaft in Sportvereinen) mit Blick auf die solidarische Gesundheitsversorgung kontrovers diskutiert (Schmidt 2008) Sowohl das Heranziehen von Self-Tracking-Daten im Rahmen von Bonusprogrammen wie auch verhaltensbasierte Versicherungstarife werfen die grundlegende Frage auf, wie viel Eigenverantwortung von Einzelnen in solidarischen Gefügen eingefordert werden darf (Martani et al 2019). Ein extremer Fokus auf einen bestimmten -durch Self-Tracking-Daten nachgewiesenen -Lebensstil als solidarischer Beitrag kann hier falsche Vorstellungen von gesundheitlicher Eigenverantwortung befeuern (Hummel und Braun 2020). Schließlich sind Lebensstile immer von sozialen Bedingungen abhängig, auf die das Subjekt selbst nur begrenzten Einfluss hat (Martani et al 2019).…”

“…Die in diesem Zusammenhang entstehenden Verbindlichkeiten sind daher hinsichtlich möglicher Asymmetrien oder Herrschaftsverhältnisse innerhalb der Solidargemeinschaften zu prüfen. Dem Ideal der Freiwilligkeit kommt hier eine besondere Bedeutung zu (Hummel und Braun 2020), um ein angemessenes Verhältnis zwischen Beitrag und Leistung, Eigenverantwortung und Solidarität sicherzustellen.…”