Balliol Interdisciplinary Institute and OII Seminar Series on Privacy Issues in Genomic Medicine

Genetics and Patient Empowerment: The new frontier of medicine

About

“Ten years ago the UK was home to one of the great breakthroughs in the story of mankind. The first human genome was sequenced. It took £100,000,000 and over ten years of focused scientific effort. Today the explosive breakthroughs in genetics and computing make it possible to achieve the same with £1000 in 24 hours. Now clinics are appearing around the world offering personalized cancer therapy – with drugs tailored to your specific disease and condition. The Government is onto this exciting new dawn of genetic medicine and through the Life Science Strategy and its £100m Cancer Genomics Project is heralding a revolution in genetic and personalised medicine that will define diagnosis, treatment and aftercare in the 21st Century. But, at the heart of this revolution, there are some important questions about the rights of patients that must be addressed, in order for us to open the NHS to allow greater access to the type of medical breakthroughs that will fundamentally change the way we treat illness and disease in our society.

This is the new frontier of medicine, one that will fundamentally change healthcare in the UK, not only for the NHS and UK plc, but most importantly of all, patients.

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.