This project seeks to investigate the ethical aspects and requirements of Big Data in preparation to develop a European framework for the ethical use of Big Data in biomedical research.
In biomedical research, the analysis of large datasets (Big Data) has become a major driver of innovation and success. Oxford is at the forefront of the Biomedical Big Data revolution. However, the collection, storage and analysis of biomedical Big Data potentially raises serious ethical problems, which may threaten the huge opportunities it offers. Traditional ethical issues associated with research concerning informed consent and the privacy of data subjects are undoubtedly relevant, being driven to new extremes through the capacity of Big Data analytics to identify novel relationships between data and datasets. Uncertainty over potential uses and consequences of biomedical datasets can foster doubt, hyperbole and stagnation among data subjects, researchers and regulators alike.
The risk is that of a double bottleneck: ethical mistakes or misunderstandings may lead to distorted legislation, which may cripple the usability of Biomedical Big Data in medical research, health care, and industry, as evidenced by a recent Statement issued by the Wellcome Trust on “The impact of the draft European Data Protection Regulation and proposed amendments from the rapporteur of the LIBE committee on scientific research”. As a consequence, there is a widely acknowledged need for a European framework for the ethical use of Big Data in biomedical research.
This project seeks to address this need, encouraging ethically responsible innovative uses of biomedical Big Data across the EU and beyond. The study has three main research objectives:
(1) to formulate a blueprint of the ethical aspects, requirements and desiderata underpinning the project for a European framework for the ethical use of Big Data in biomedical research;
(2) to strengthen and coordinate multidisciplinary research in Oxford in the area of ethical and relevant socio-legal aspects of Biomedical Big Data; and
(3) to consolidate world-leading expertise in the ethics of Biomedical Big Data in Oxford that will enable and support research on large health-related datasets at the Li Ka Shing Centre for Health Information and Discovery and will contribute to the goals of the Strategy for the UK Life Sciences, which aims to improve research outcomes and the attractiveness of the UK as a centre for global research excellence.
On the latter point the project is hosting an ‘Ethics of Biomedical Big Data‘ workshop in April 2015 at the Oxford Internet Institute, which will bring together the expertise of ethicists, Big Data scientists, industry and regulators in discussing issues in this area, with the aim of creating a blueprint for developing a framework for ethical use of Big Data in the future.
The project is funded through a grant from the John Fell Oxford University Press (OUP) Research Fund.
Workshop: Ethics of Biomedical Big Data
- April 27, 2015
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 will host a workshop on April 27, 2015 as part of the ‘Ethics of Biomedical Big Data‘ project. The workshop will bring 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 aims 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, video recordings of several talks are available 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, closing on April 15, 2015.
Biomedical Big Data: Challenges and Opportunities – Luciano Floridi, University of Oxford
Problems of Context and Abstraction in Big Data – Brent Mittelstadt, University of Oxford
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
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
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
Mittelstadt, B.D. and Floridi, L. (eds) (2016), The Ethics of Biomedical Big Data. Springer. ISBN: 9783319335230.