Traditionally, we trust doctors with confidential information about our health in the knowledge that it’s in our own interests. Similarly, few patients object to the idea that such information may be used in some form for medical research. But what happens when this process is subject to scrutiny?
How explicit does our consent have to be? Since the introduction of the Data Protection Act 1998 medical researchers have raised concerns over the increasing barriers they face to accessing patient data.
These concerns have heightened amongst some researchers since the passing of the Human Tissue Act 2004 introduced in the wake of the Alder Hey and Bristol Royal Infirmary scandals. When scientific advances are unraveling the secrets of DNA and the decoding of the human genome has opened up substantial new research opportunities.
Clinical scientists and epidemiologists argue that the requirements being placed upon them are disproportionate to the use they are making of either datasets or tissues samples and, besides, their work is in the public interest.
At the heart of the debate lie key questions over trust and consent and how these can best be resolved.
To complicate things, it is no longer just medical researchers, but also public health bureaucrats who are keen to have access to our data.
Quasi-official bodies have been charged with persuading individuals to change their behaviour and lifestyles in connection with all manner of issues such as diet, exercise, smoking and alcohol consumption.
Social Marketing – the borrowing of commercial marketing techniques in the pursuit of 'public goods' – is in vogue amongst public health officials. Empowered by advanced data collection and computing techniques, armed with the latest epidemiological research, and emboldened by a mission to change unhealthy behaviour, public health officials are keen to target their messages to specific 'market segments' in most need of advice.
Are government researchers abusing patients' trust? Can and should a distinction be made between the use of data for research and public health promotion purposes, or do the benefits of data-sharing outweigh its disadvantages?- Institute of Ideas
Bio
Ross Anderson
Ross Anderson is Professor of Security Engineering at Cambridge University. He is a co-founder of a vigorously-growing new discipline: the economics of information security. Many security failures can be traced to wrong incentives rather than technical errors, and the application of microeconomic theory has shed new light on many problems that were previously considered to be intractable.
The work is particularly important for understanding not just online crime but also system safety and dependability, as well as more traditional security problems of interest to the law enforcement and insurance industries.
Anderson also made seminal contributions to peer-to-peer systems; hardware tamper-resistance; emission security; copyright marking; crypto protocols; and the security of APIs. Anderson has written extensively on the failures of real-world systems, including automatic teller machines, prepayment meters and medical record systems. Anderson is a Fellow of the IET and the IMA, and wrote the standard textbook Security Engineering: A Guide to Building Dependable Distributed Systems.
Anderson chairs the Foundation for Information Policy Research, the main UK think-tank on internet and technology policy issues.
Stuart Derbyshire
Dr. Stuart Derbyshire is a senior lecturer in the School of Psychology, University of Birmingham. Derbyshire has recently worked in the U.S. as Assistant Professor at the University of Pittsburgh Medical Center in the Department of Anesthesiology, and as Assistant Professor at the UCLA/CURE Neuroenteric Disease Program in the VA Greater Los Angeles Healthcare System.
Derbyshire has also been a Visiting Research Fellow at the University of Pittsburgh in the Departments of Anesthesiology and Critical Care Medicine. Derbyshire has published extensively in the area of medicine, particularly around the scientific understanding of pain.
Tim Kelsey
Tim Kelsey is Chair of the Executive Board of Dr Foster Intelligence, the UK's leading health and social care informatics organisation. The company, a joint venture with the NHS Information Centre, is a public-private partnership committed to improving the accessibility, coverage and use of intelligent information among frontline care professionals.
Dr Foster Intelligence works with more than 80% of acute hospital trusts and 50% of PCTs and SHAs to help monitor the quality and effectiveness of patient care. In addition, it publishes a variety of interactive local health service guides to the general public. In 2007 Dr Foster Intelligence received the Innovation award at the Laing & Buisson Independent Healthcare awards. The award is in recognition of the significant contribution RTM is making to the healthcare sector.
Kelsey is also Chief Executive of Dr Foster Research, a subsidiary set up to work with non-health service partners. In 2006, Kelsey was listed one of the 50 most influential people in the NHS by the Health Service Journal and in 2008 won the award for outstanding individual¯ at the Healthcare Investor Awards for his work on NHS Choices.
A well-respected journalist and broadcaster, Kelsey graduated in history from Cambridge and then worked as a reporter for the Independent on Sunday and Channel 4, among others, before becoming News Editor of the Sunday Times. Kelsey co-founded Dr Foster in 2000.
Jeffrey Rosen
Jeffrey Rosen is a professor of law at George Washington University and the legal affairs editor of The New Republic. A widely read legal commentator, his most recent book is The Supreme Court: The Personalities and Rivalries that Defined America, a companion book to the PBS series on the Supreme Court.
He is also the author of The Most Democratic Branch, The Naked Crowd, and The Unwanted Gaze.
A graduate of Harvard College, Oxford University, and Yale Law School, he has been a staff writer for The New Yorker magazine, and his essays and commentaries have appeared in the New York Times Magazine and The Atlantic, as well as on National Public Radio.
Mark Walport
Mark Walport was appointed as Director of the Wellcome Trust in June 2003. He heads one of the world's largest biomedical research charities, which spends some £400 million a year in pursuit of its mission to foster and promote research with the aim of improving human and animal health.
Before joining the Trust, he was Professor of Medicine and Head of the Division of Medicine at Imperial College London where he led a research team that focused on the immunology and genetics of rheumatic diseases. He was appointed a member of the Council for Science and Technology in 2004.
System for quick search and retrieval of information from a database. The DBMS determines how data are stored and retrieved. It must address problems such as security, accuracy, consistency among different records, response time, and memory requirements. These issues are most significant for database systems on computer networks. Ever-higher processing speeds are required for efficient database management. Relational DBMSs, in which data are organized into a series of tables (“relations”) that are easily reorganized for accessing data in different ways, are the most widely used today.
I wish one of these discussants would have poignantly mentioned Hannah Arendt's work, "Eichmann in Jerusalem: The Banality of Evil." It is somewhat depressing that the painful lessons of fascist Nazi Germany seem to have already been forgotten by the baby-boomer generation. When listening to those on this panel who were so enthusiastic about what amounts to adding another block to a totalitarian system, I immediately recognized the underlying similarity of the enthusiasts' arguments to those eased central Europe onto the slippery slope it found itself on in the 1930's. We don't need technicians making moral decisions for society-at-large, in secret, simply for the benefit of some non-human, overly-rational "system." We don't need to enable another Dr. Mengele. They still exist. Secondly, if better health-care was the real aim, this could be accomplished in many other ways, all much more humane. For instance, simply increasing the number of general practitioners ... regular, non-specialized medical doctors that actually know their patients personally. Or more preventative care. The list is endless, and few of the other options would help crush the basic civil liberties of societies. Thirdly, there was little discussion about health-insurance companies and the profit motive, or the great potential for basic, common corruption. A major insurance corporation with millions of dollars at its disposal is fully capable of bribing or hacking its way into digitized health records, allowing "IT" to make "better informed decisions" over your treatments, potential policies, denial of treatments, premium hikes, etc. This is simply an awful idea; it will not guarantee better health care, but it does guarantee the eventual, gradual loss of individual privacy. We have seen parallel situations before, only decades ago, both in fascist Europe, and in the eugenics movement of the early 20th century in the United States. It might do us all well to ponder what Ms. Arendt meant by that powerful phrase of hers, "...the banality of evil."
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