Date: 3rd December 2013
Time: 5pm-6.30pm (followed by Wine Reception)
Venue: Playfair Library, Old College, South Bridge
Significant changes are taking place to the information governance of confidential patient information in England and Wales. In particular, there is a move to improve research access to patient data in the public interest. How do we respond to the suggestion that a reasonable expectation of privacy should take account of the interests of others and patients should expect access to their records?
One approach to justifying access to confidential personal information, and unpacking the idea of the public interest, requires that access is only granted under conditions that an individual patient has reason to accept. How would this idea of the public interest restrict access to personal data, even where access had been granted under the conditions of a broad consent?
Has the time come to move away from the idea that private and public interests need to be balanced, one against the other, and instead recognise that, when it comes to use and disclosure of our personal information, we can only be said to reasonably expect that which we have been given reason to accept?
Mark Taylor is a senior lecturer in the School of Law at the University of Sheffield, author of Genetic Data and the Law (CUP, 2012) and a mid-career Fellow of the British Academy (2012-2013). He 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, was joint PI on the PRIVILEGED project (www.privilegedproject.eu), and is involved with two EU (FP7) studies: RECODE (http://recodeproject.eu/) and SNIFFLES (http://www.sniffles.eu/).
Please note, that this is a keynote lecture of the PhD Conference – http://lawphdconference.ed.ac.uk/.
This specific lecture is open to all (by registering on this page) and supported by the Mason Institute. It will be followed by a wine reception.