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The University of Southampton
Southampton Ethics Centre

'Drawing the line between identifiable and anonymised health data: dilemmas for a conscientious public servant' Event

Time:
15:00 - 17:00
Date:
8 January 2014
Venue:
Room 2007 Building 4 Highfield Campus

Event details

Part of the HEAL seminar series

Abstract:

Researchers, commissioners, pharmaceutical companies, even the Prime Minister, want to use the "big data" within heath records for public and private good.  However, the law tells us to draw a line between anonymised data which can be used for "secondary purposes" like research and commissioning, and identifiable data, which should be protected.

But where should the line be drawn? The law provides relatively little guidance.  The truth is that almost all useful datasets, and any datasets for "big data" processing, fall somewhere between these two extremes. But what does that mean for policy? If "anonymised data" almost inevitably carries some small risk of identifying patients, should the public be asked for consent before anonymised data are processed? If so, how is the population to be informed and asked? Should resources be spent on such a communication campaign rather than patient care? What is a conscientious public official to do?

Speaker information

Malcolm Oswald,University of Manchester

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