The law currently allows for genetic data, gathered for clinical purposes, to be disclosed for health research purposes without patient consent if certain conditions are satisfied. This is intended to ensure that disclosure only takes place when it is ‘in the public interest’. If we move toward a position where broad consent is sought for research use of genetic data gathered by the NHS, to what extent would a ‘public interest test’ continue to have relevance? How might it be applied and what would be the implications, especially for individual privacy?
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.
Data Dump to delete
- Name: Mark Taylor
- Affiliation: University of Sheffield, School of Law
- Bio: Mark Taylor was invited, by the Health Research Authority, to take up the position of Establishing Chair of the Confidentiality Advisory Group on 1st April 2013. Previously he was Chair, and former Vice-Chair, of the Ethics and Confidentiality Committee of the National Information Governance Board for Health and Social Care (NIGB). He has recently been invited by Dame Fiona Caldicott to join the Independent Information Governance Oversight Panel (IIGOP). IIGOP is to report to the Secretary of State for Health in England on the implementation of the recommendations made in the Information Governance Review, “Information: To share or not to share?” (March, 2013). Mark chaired the NIGB Task and Finish working group on Research Databases, he is currently Deputy Director of the Sheffield Institute for Biotechnology Law and Ethics, and is involved with two EU (FP7) studies: RECODE (http://recodeproject.eu/) and SNIFFLES (http://www.sniffles.eu/). He is a senior lecturer in the School of Law at the University of Sheffield, was joint PI on the PRIVILEGED project (www.privilegedproject.eu), author of Genetic Data and the Law (CUP, 2012) and a mid-career Fellow of the British Academy (2012-2013).