Information Governance - To Share or not to Share?

Dame Fiona Caldicott FRCP, FRCPsych, FMedSci

Wednesday 7 May 2014 17:00 - 18:30

Balliol College, University of Oxford, Lecture Room XXIII.

Registration is not required for these seminars. The seminars run from 17:00 to 18:30 on Wednesdays, starting on October 23, 2013 and held on alternate weeks during Michaelmas Term (i.e. Oct 23, Nov 6, Nov 20 and Dec 4, 2013); they will continue during Hilary and Trinity Terms 2014 with the closing workshop on June 18, 2014. For any queries, please contact: arthur.thomas@oii.ox.ac.uk

This event is part of Balliol Interdisciplinary Institute and OII Seminar Series on Privacy Issues in Genomic Medicine

Abstract

The Government commissioned a review in 2012 on whether there is an imbalance between sharing health data when it is in the subject's interest for that to occur, and attention to privacy.

The process of the review and its findings will be summarised, with the implications for the increasingly linked health and social care system, for data security and protection, and new and emerging systems.

The Independent Information Governance Oversight Panel, which was then established, and its work to date will be described.

Not least, are public attitudes to the subject changing and what has the controversy about care.data done to public trust?

About the Seminar Series

The rapidly-declining cost of genomic sequencing promises many breakthroughs in our understanding of genetic predisposition to disease and for the development of medical treatments more precisely tailored to the individual patient. Much of this genomic data will end up in databases maintained by research and healthcare organisations (and increasingly by commercial "personal genomics" companies) which will have the ethical and legal responsibilities for preserving the privacy of such sensitive information. Unfortunately, recent research suggests that it is much more difficult than was first imagined to preserve the privacy of such information. Many existing methods for "de-identifying" or "anonymising" such data have been shown to be fragile: correlation of information from genomic databases, electronic health records and public sources such as genealogy and residence databases can often lead to surprisingly accurate inferences about the identities of individuals. If such information were to becomes widely available, it might compromise the ability of individuals to obtain health and life insurance, and might influence employment and even personal relationship decisions. Such information leakage might also well have a significant chilling effect on the public's willingness to participate in research and clinical studies.

We are organising a series of seminars, funded by the Balliol Interdisciplinary Institute, to examine the current state of information privacy in this domain, and to look in particular at several questions:

  • To what extent can technology keep up with the arms race between "hackers" and data curators? Will recent advances in cryptography, database security architectures and "privacy preserving" data mining methods mitigate the risks, now and in the future?

  • What is the current state of legislation and regulation in this domain, and how is it likely to evolve in the face of developing attacks on privacy? Who actually owns and has control over genomic (and related health) data and its uses? Are there significant national and cultural differences which need to be taken into account (especially when data storage may transcend jurisdictional boundaries e.g. when data are stored in commercial "clouds")?

  • To what extent does the appearance of patient-centric disease management portals such as PatientsLikeMe mitigate the concerns about privacy? Will patients' altruistic urge to share information about themselves, their disease and their interactions with the healthcare system outweigh their concerns about their personal privacy? What is the appropriate balance between the public good which results from data sharing and the potential private loss?

  • What changes need be made to informed consent protocols to ensure that both researchers and donors fully understand and accept the risks associated with data collection and use?

  • If, as Scott McNealy (former CEO of Sun Microsystems) once said "Privacy is dead ñ get used to it," and privacy is doomed to lose the arms race, what is the impact likely to be on public attitudes towards, and expectations of, personal genomic privacy? In a world where people are willing to commit intimate personal information to Facebook, should we even worry about the consequences of loss of genomic privacy? Or should we rather be addressing the issues inherent in completely open sharing of such information?

Answers to some or all of the above questions would have a profound impact on the practice of scientific research and medicine. A clear analysis of the risks, methods for mitigating those risks, and, alternatively, of the consequences of a deliberate policy of transparency, will help policy makers to develop realistic approaches to public education about, and the setting of guidelines for future research on, and exploitation of, personal genomic information.

About the speaker

Dame Fiona Caldicott FRCP, FRCPsych, FMedSci

Oxford University Hospitals NHS Trust

Dame Fiona is the Chairman of the Oxford University Hospitals NHS Trust. She undertook an independent review of information governance for the Secretary of State for Health and the Report was published in April 2013. Its recommendations were accepted by the Government and are being implemented. At the request of the Secretary of State she is now chairing an Independent Information Governance Oversight Panel to bring scrutiny and assurance to the health and social care system. From 1996-1997 she chaired the Caldicott Committee on patient identifiable data for the National Health Service Executive, which led to Caldicott Guardians being appointed in all providers in the NHS. As President of the Royal College of Psychiatrists 1993-1996, she was also Chairman of the Academy of Medical Royal Colleges 1995-1996. She was Principal of Somerville College in the University of Oxford from 1996-2010, and served as Pro-Vice-Chancellor (in the University) with responsibility for Personnel and Equality. She is on the Council of Warwick University and of the United Nations University.