Workshop bringing together expertise to address emerging challenges in the field, and the requirements for a European framework for ethical usage of biomedical Big Data.

This workshop brought together expertise from academia, medicine and industry to address emerging challenges in the field, and the requirements for a European framework for ethical usage of biomedical Big Data. In biomedical research, the analysis of large datasets (Big Data) has become a major driver of innovation and success. Epidemiology, public health and infectious diseases research, biobanks, genomic and microbiome sequencing are already deeply affected by Biomedical Big Data, alongside emerging forms of commercial collection and self-curation of medical data (e.g. health ‘apps’, online health records, wearable computing). However, the collection, storage and analysis of this data potentially raises serious ethical problems, which may threaten the huge opportunities it offers. Recent movement from the NHS to further share patient data (care.data) and related data sharing throughout Europe make addressing these problems in the near term very pressing.

To address these and similar questions the Oxford Internet Institute hosted a workshop on April 27, 2015 as part of the ‘Ethics of Biomedical Big Data‘ project. The workshop brought together expertise from academia, medicine and industry to address emerging challenges in the field, and the requirements for a European framework for ethical usage of biomedical Big Data. The workshop aimed to address questions such as:

  • What are the unique ethical challenges of biomedical Big Data?
  • What does the ethical landscape look like beyond issues of informed consent and privacy?
  • How should collection, sharing and re-uses of biomedical Big Data be regulated?
  • Which existing and prospective Big Data practices are particularly problematic or require further analysis/regulation?
  • How can we develop an ethically sound framework for using Big Data in biomedical researchas well as commercial applications at a European level?
  • What lessons can be learnt from previous or different experiences in applied ethics that could help in dealing with the new challenges posed by Big Data in biomedical research?

Although a closed workshop, a video recording of the workshop will be published via the Institute’s website. Proceedings will be published in an edited volume entitled ‘The Ethics of Biomedical Big Data’ in Springer’s Law, Governance and Technology book series. Selected papers from the workshop will be included alongside submissions from an open call for chapters.

Workshop Agenda

Ethics

Policy

  • Re-conceiving Biological Samples as Information Carriers – Paul de Hert, Vrije Universiteit Brussel & Dara Hallinan, Fraunhofer Institute for Systems and Innovation Research ISI
  • Big Data Analytics, Correlation and Inference in Health Care and Beyond: Challenges to Existing Privacy and Public Policy Paradigms – Joseph Alhadeff, Oracle

Governance

  • Big Data – Big Governance – Jane Kaye, University of Oxford
  • A Solidarity-based Perspective on Data-rich Medicine – Barbara Prainsack, King’s College London
  • Big Data, Broad Consent: Ethical Challenges in Rare Disease Genomics – Simon Woods, Newcastle University

Cases

  • Innovation, Big Data and Placebo Effect: The Case of Antidepressant Trial – Andrea Cipriani, University of Oxford
  • The Challenges of Intensified Data Sourcing in a Research Radical Country: The Case of Denmark – Klaus Hoeyer, University of Copenhagen

About the speakers

This page was last modified on 15 March 2017