Deborah Lupton (virtual from Australia)

Health Information Ecologies: Surfacing the More-than-Human Dimensions of Data about Human Bodies and Health 

In this presentation, I discuss how more-than-human theory can be brought together with multisensory and creative methods drawing on the arts and museology to surface the ways in which human bodies and health states are entangled not only with digital technologies and data but also with aspects of the non-digital world. I use examples from my research teams’ projects to illustrate how we have used these methods to create the ‘More-than-Human Wellbeing’ exhibition. We use the term ‘lively data’ to describe the information and marks left by humans and other living things as they move, grow, age, die and decay, constantly changing form and entering into new more-than-human assemblages. The methods with which we are working attempt to stimulate recognition of people’s personal data as human remains and to make the connection between nonhumans, humans and more-than-human vitalities, interconnected relationships and distributed wellbeing. 

Deborah Lupton is SHARP Professor in the Centre for Social Research in Health and the Social Policy Research Centre and leader of the Vitalities Lab, University of New South Wales, Australia. Professor Lupton is also the UNSW Node Leader, Health Focus Area Leader and People Co-Leader of the Australian Research Council Centre of Excellence for Automated Decision-Making and Society

Janna Hastings

Why Health Datafication Requires Semantics, and How with the Human Behaviour-Change Project

The increasing use of data-driven information systems for personalised health is supported by advanced algorithms which are able to synthesise large-scale information and make personalised predictions. However, many such algorithms operate as ‘black boxes’ that do not offer any insights into the reasons for their predictions. Without the possibility of oversight, there are significant risks that these algorithms exacerbate biases and inequalities that might be present in their training data. Thus, there is a need for approaches to data-driven prediction that are transparent and semantically understandable. I will show how this can be achieved, using the example of the Human Behaviour-Change Project which is developing a knowledge system about human behaviour change. The knowledge system is able to make predictions about the outcomes of hypothetical behaviour change interventions based on integrated evidence from the research literature. The predictions are based on machine learning with semantic background knowledge in the form of ontologies, which capture meaningful definitions and relationships between entities. Semantics-aware machine learning provides a general path forward for more robust and trustable datafication in health.

Janna Hastings is assistant professor of Medical Knowledge and Decision Support at the Institute for Implementation Science in Health Care, Faculty of Medicine, University of Zurich, and vice-director, School of Medicine, University of St. Gallen. 

Tamar Sharon

Towards a theory of justice for the digital age: Lessons from the datafication and Googlization of health

In the past decade, large technology corporations such as Alphabet, Apple, Meta, Amazon, Microsoft and Palantir have become increasingly present in health and medicine, with activities ranging from mobile health application development and prognostic and diagnostic AI, to health record management and health insurance services. Critical scholars have approached the risks of this “Googlization of health” mainly through two critical lenses: privacy harms and commodification harms. In this talk, I will discuss the numerous risks raised by this phenomenon that are not addressed by either of these critical lenses, nor their concomitant regulatory frameworks – data protection and anti-trust law. Using Michael Walzer’s theory of complex equality in Spheres of Justice (1983), I argue that we should understand Big Tech expansionism in health and medicine as a “sphere transgression”, which raises not just privacy and commodification risks, but also risks of domination and tyranny. Insofar as Big Tech expansionism is happening not just in the sphere of health and medicine but virtually all sectors that undergo digitalization today, this calls for a new theory of justice for the digital age, which seeks to protect spheres, and for which I try to trace the main lines.  

Tamar Sharon is professor of Philosophy, Digitization and Society, chair of the Department of Ethics and Political Philosophy at Radboud University, and co-director of iHub, Radboud’s interfaculty center for research on digitalization and society.