Balliol Interdisciplinary Institute and OII Seminar Series on Privacy Issues in Genomic Medicine
The falling cost of genomic sequencing promises many breakthroughs in our understanding of genetic predisposition to disease and for the development of medical treatments. This seminar series examines the current state of information privacy in this domain.
- Past Events
- About the Series
Past events
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Balliol Interdisciplinary Institute and OII Seminar Series on Privacy Issues in Genomic Medicine, Part 12
18 June 2014
The principle goal of this half day workshop will be to try to arrive at a summary report on the important issues which have been raised in this seminar series.
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Negotiating information privacy in healthcare: an empirical examination of professional practices and the reconfiguration of patienthood
4 June 2014
Drawing on an empirically informed understanding, Chrysanthi will discuss how health and IT professionals organise information privacy practices in the context of integrating patient records for the provision of HIV health services in the NHS.
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Privacy in the Twenty-First Century: Four Questions for Regulators
21 May 2014
These seminars will examine the current state of information privacy in genomic medicine.
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Information Governance – To Share or not to Share?
7 May 2014
These seminars will examine the current state of information privacy in genomic medicine.
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Dynamic Consent – A Tool to Protect Privacy and Enable Research
12 March 2014
Dynamic consent (DC) is a concept and a specific project, designed to meet the needs of the 21st century biobanking and data sharing. In this talk, Dr Jane Kaye reports on her work and describe the challenges and benefits of implementing the platform.
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Practical Ethical Problems Relating to Privacy and Confidentiality in the Clinical use of Genetics and Genomics
26 February 2014
In this presentation, Professor Michael Parker will explore the ways in which privacy and confidentiality concerns arise as practical ethics problems in the day-to-day clinical use of genetics.
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Data Anonymisation, Partial Ownership, and Highly Correlated Data Sets
12 February 2014
This seminar will explore technical means by which data is traditionally anonymised and highlight how these anonymisation methods fail, particularly when compounded by various key features of genomic data.
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Computing on Encrypted Data
29 January 2014
In this talk, Professor Smart will outline the current technical approaches to computing on encrypted data, some of which are only (currently) theoretically possible, and some of which are practical with today's technology.
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Reconciling Data Reuse and Informed Consent in the Cloud
4 December 2013
These seminars will examine the current state of information privacy in genomic medicine.
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A public interest in genetic research with or without broad consent?
20 November 2013
These seminars will examine the current state of information privacy in genomic medicine.
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Genetics and Patient Empowerment: The new frontier of medicine
6 November 2013
These seminars will examine the current state of information privacy in genomic medicine.
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Openness vs Privacy: looking for technical solutions
23 October 2013
These seminars will examine the current state of information privacy in genomic medicine.
About the 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.