The ends of data: theories, methods, and interventions in critical data and AI studies

To What Ends? Sharing and Repairing Data Afterlives

Professor Mary Ebeling, Drexel University

Our data live uncanny afterlives in the databases of some of the world’s most powerful companies, to circulate as digital commodities that are unleashed from databases to generate value and profit. Health data—medical information extracted from patients' bodies—are digitized and repackaged into new data commodities. As objects reborn to produce financial value, data commodities go on to live in data lakes and oceans, algorithms, and statistical models used to score patients on their creditworthiness and riskiness in marketing and capitalist surveillance. Information about our health and the debt that we carry become the biopolitical assets owned by healthcare providers, insurers, commercial data brokers, credit reporting companies, and platforms. This massive industry actively obscures how it profits from our health data.

These data, far from embodying objective facts about our lives, reflect the socio-political interests and investments of powerful forces. They are embedded with historic biases and structural injustices. Consequentially, they often produce great harms that affect our bodies and our life chances, as they increasingly define us, and shape our opportunities and choices. When controlled by corporations, data rarely help to close health equity gaps. Instead, algorithms and models, based on health data commodities, can exacerbate and reinforce patient harm and poor health outcomes. Mary F.E. Ebeling will trace some of these afterlives that personal health and financial data live, and consider ways to repair these harms, to reset the ends of data in the direction towards reparative data justice.

Mary F.E. Ebeling Full Professor in Sociology and affiliate faculty in the Center for Science, Technology and Society, at Drexel University, in Philadelphia, USA. She is a visiting researcher at the Institute for Informatics (I2) at Washington University School of Medicine in St. Louis (Missouri, USA). Her research examines the intersections of gender, race, and digital technologies, data privacy, health marketing and medical capitalism. Her latest book Afterlives of Data: Life and Debt Under Capitalist Surveillance examines data commodification and AI governance in healthcare and consumer finance.

Data for the Public Good? Expanding Data Practices Confront Environmental Concerns

Professor Ulrike Felt

Practices of collecting and storing (banking) data have been firmly established as core activities in science and society and our thirst for more data seems to have become insatiable. Not only need these data to be able to travel across diverse boundaries, be they scientific, sectoral or territorial; we also witness the creation of a fast-expanding extractive data industry (data mining and AI) promising an ever-increasing value of data. The latter serves as justification for considerable investments in “keeping massive amounts of data alive”, i.e. in assuring their constant spatio-temporal availability. However, more recently we witness emerging concerns urging to reflect that the acceleration and expansion of digitalization will create massive challenges for environmental sustainability.

In my presentation, I explore these frictions between a green and a digital transition largely silenced in current European policy discourse which promises a smooth “twin transition” and a “win-win” situation for everybody. Concretely I will explore a number of questions, such as: What valuation and justification practices can we observed for current data practices? What kinds of (often tacit) imaginaries of lives of data can we observe? And, what would it entail when looking at data as waste (or data related waisting) and how can we balance value and waste when it comes to data?

This talk draws (1) on work within the ERC grant “Innovation residues” which offers a reading of contemporary innovation societies through the left-behinds of innovation – in this case data waste (http://innovation-residues.eu) and on (2) by research on data practices in the biomedical realm.

Ulrike Felt is professor of Science and Technology Studies and head of department at the University of Vienna (http:sts.univie.ac.at/). Her research focuses on the transformations of research/knowledge/technology cultures and related institutional transformations as well as questions of governance and public participation in contemporary technoscientific democracies and she has published widely in these areas. For many years she has been working on topics related to health care, biomedicine and the life sciences, more recently specifically investigating digital/data practices. She is engaged in policy advice both on national and European level. She was editor-in-chief of the journal Science, Technology, & Human Values (2002-2007) and of the Handbook of Science and Technology Studies (MIT Press, 2017). From 2016-2021 she was president of European Association for the Study of Science and Technology (EASST). In 2019 she was elected member of the Academia Europaea. Currently she is working on her ERC Advanced Grant "Innovation Residues – Modes and Infrastructures of Caring for our Longue-durée Environmental Futures" (http://innovation-residues.eu) and has won a 2022 Falling Walls Breakthrough Award in the category of social sciences and humanities for her novel approach to innovation.