David Sepkoski, Max Planck Institute for the History of Science

David Sepkoski, Max Planck Institute for the History of Science

Monday, 18 September 2017 at 15:00 in the Large Operon, EMBL Heidelberg

Brent Mittelstadt, University of Oxford

The Ethics of Biomedical Big Data: Between individual and public health interests

Abstract

The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Biomedical research has long been predominated with ethical concerns and protections focused primarily on the interests of individuals. Ideally, individuals are to be well informed and in control, equipped to make informed choices about their participation in research, as well as exploitation of the samples and data their participation in formal healthcare systems and emerging digital services create. Yet the emergence of Big Data has been accompanied by exponential growth and diversification of challenges facing individual control. Dynamic consent systems, medical data repository governance schemes, and emergent data protection law seek to grapple with the growing complexity and scale of governance of biomedical and health data. However, it is unclear whether a continued focus on the protection of individual interests is entirely appropriate in the context of Big Data, which finds meaning not in the uniqueness of individuals but rather small patterns between people. Concepts such as privacy and identity increasingly have a group dynamic which cannot be ignored. This talk will landscape the challenges facing protection of individual interests in contemporary biomedical research, and examine how a shift from in emphasis from individual to collective interests is necessary in research governance, bioethics and policy discourse.

Biography

Dr. Brent Mittelstadt is a researcher in data ethics at the Alan Turing Institute, University College London and the University of Oxford. His research addresses the ethics of algorithms, machine learning, artificial intelligence and data analytics (‘Big Data’). His immediate research focuses on ethical auditing of algorithms, including the development of standards and methods to ensure fairness, accountability, transparency, interpretability, and protection of group privacy in complex algorithmic systems. A recent paper on the lack of meaningful and accountability and transparency mechanisms for automated decision-making in the General Data Protection Regulation highlights the pressing need for work in these areas. Over the past five years his focus has broadly been on the ethics and governance of emerging information technologies, including a special interest in medical applications. Reflecting this, in the past year he has worked on the Data Analysis in IoT Solutions for Healthcare (DASH) project, part of the EPSRC’s PETRAS IoT Hub, to develop ethical guidelines for designing the health-related Internet of Things. Prior to this he collaborated with Prof. Luciano Floridi on the Ethics of Biomedical Big Data project at the University of Oxford. With support from the Brocher Foundation and the University of Oxford’s John Fell Fund he has recently organised workshops and symposia on ethics, policy and governance for biomedical Big Data, which led to the publication of an edited volume in Springer’s Law, Governance and Technology book series and a special issue in Philosophy & Technology. Dr. Mittelstadt holds an affiliation with St. Cross College in Oxford, and is also a member of the Oxford Internet Institute’s Ethics and Philosophy of Information research cluster.