MeST Seminar with Professor Barbara Prainsack and Professor Sandra Soo-Jin Lee

Centre for Medical Science and Technology Studies, University of Copenhagen announces the following double seminar:

Not only justice: Why it is time for data solidarity

Barbara Prainsack, Ph.D. University of Vienna

Abstract: The challenges emerging from datafication and data use in the digital era cannot be addressed with the tools of the paper age. The accumulation of power and capital in the hands of private corporations that are not accountable to the public is one reason for this; the increasing asymmetries between data subjects and data users more broadly - including government and other public bodies - are another. Arguing that the traditional focus on individual control has obfuscated structural issues, and at times been a barrier to collective action and control, data solidarity seeks to increase collective control, oversight and ownership over digital data and resources. This paper sketches the main pillars of data solidarity, give examples of policies and institutions that can help to realize data solidarity, arguing that data solidarity is necessary for data justice. Not only in the sense that it helps to implement justice (as is often argued in the literature), but it helps us to understand what justice can and should mean in the context of digital practices.

The Problem of the Gap: Functional Trouble, Moral Trouble and Epistemic Injustice in Human Genetics

Sandra Soo-Jin Lee, Ph.D Columbia University

Abstract: Human genetics has a gap problem. Samples from individuals of European ancestry continue to make up over 80% of data sets. Scientists warn this bias limits their ability to make generalizable inferences about the relationships between genes, behaviors, environmental exposures, and disease risks, and threatens the equitable translation of precision. The problem of the gap surfaces both functional trouble for scientific goals of ontological completeness and moral trouble for ethical commitments for the just inclusion of disenfranchised groups. Drawing on empirical data from a multi-institutional study of the “diversity gap” – what data is missing and how it relates to genomic knowledge, I argue that the problem of the gap is inextricable from forms of epistemic injustice, which must be understood in terms of structural erasures that bias genomic knowledge. Taking seriously the assumption that any claim of injustice must rely on shared understanding of lived experience, I explore the ethics of solidarity as a necessary condition for an equitable genomics.

Barbara Prainsack is Professor and Head of Department at the Department of Political Science at the University Vienna, and directs the Centre for the Study of Contemporary Solidarity (CeSCoS), and the Research Platform “Governance of Digital Practices”. Her work explores the social, ethical, and regulatory dimensions of genetic and data-driven practices and technologies in biomedicine and forensics.

Sandra Soo-Jin Lee is Professor of Medical Humanities and Ethics and Chief of the Division of Ethics at Columbia University. Trained as a medical anthropologist, Dr. Lee has extensive experience leading multi-disciplinary research on equity and the use of categories of race and ancestry in genomics, precision medicine and artificial intelligence, the ethical governance of biorepositories and commercialization of biotechnology.