Whose data is it anyway?
Medical databases, privacy and trust
Sunday 2 November, 11.00am until 12.30pm, Lecture Theatre 1

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 unravelling 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?

Professor Sir Mark Walport
director, Wellcome Trust; Government Chief Scientific Adviser (from April 2013)
Professor Sir Ross Anderson
professor of security engineering, University of Cambridge; chair, Foundation for Information Policy Research; author of Security Engineering -- A Guide to Building Dependable Distributed Systems
Tim Kelsey
Tim Kelsey, chair, Executive Board, Dr Foster Intelligence, the UK's leading health and social care informatics organisation; chief executive, Dr Foster Research
Jeffrey Rosen
professor of law, George Washington University; author, The Supreme Court: the personalities and rivalries that defined America
Dr Stuart Derbyshire
reader in psychology, University of Birmingham; associate editor, Psychosomatic Medicine and Pain

 Produced by
Tony Gilland associate fellow, Institute of Ideas

 Recommended readings
Data Sharing Review Report

There are two key steps in the implementation of any scheme to share personal data. The first is to decide whether it is appropriate to share personal data for a particular purpose. The second is to determine how data should be shared, in particular what and how much data, and by what means.

Richard Thomas & Mark Walport, Ministry of Justice, 11 July 2008

Councils: they’re watching every move she makes

Every week government departments and other authorities are finding new ways to spy on us - and passing around even our most personal details.

Jill Kirby, The Times, 8 June 2008

From DNA of Family, a Tool to Make Arrests

Privacy Advocates Say the Emerging Practice Turns Relatives Into Genetic Informants.

Ellen Nakashima, The Washington Post, 21 April 2008

Patient confidentiality and central databases

2008 may be the year when GPs find themselves in the firing line over confidentiality, as ever more patients try to opt out of ‘the NHS database’ and the Government tries ever more desperately to keep the project on track.

Ross Anderson, British Journal of General Practice, 1 February 2008

Privacy is Dead. Long Live Privacy?

Battle of Ideas 2007, FORA.tv, 27 October 2007

The forensic use of bioinformation: ethical issues

Considers whether current police powers in the UK to take and retain bioinformation are justified by the need to fight crime.

Nuffield Council on Bioethics, 18 September 2007

The Unwanted Gaze: The Destruction of Privacy in America

Explores the threat to privacy posed by new technologies, cultural changes, and gaps in privacy law.

Jeffrey Rosen, Vintage Books USA, 1 June 2001

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