This seminar is hosted by the Institute for Science and Ethics
Abstract: Data sets containing health information about large sets of patients are increasingly being used for public health enhancement on both sides of the Atlantic. These secondary uses of health information include improvement of care quality, cost-effectiveness research, detection of low frequency adverse events associated with pharmaceuticals or medical devices, and syndromic surveillance. Data are assembled from records obtaining in clinical care, payment records, pharmacy records, and many other sources. A frequent strategy advocated for confidentiality protection is de-identification; indeed, both US and EU privacy law leave data that have been de-identified to certain standards largely outside of the purview of confidentiality protection. In this talk, I first describe how data are used in selected examples of surveillance, especially syndromic surveillance and adverse event detection, arguing that the data sets employed in practice often employ identifiable patient information and would be less useful if they did not. I then criticize the use of consent models for confidentiality protection, including actual consent, hypothetical consent, and community consent. Instead, I defend standards for public knowledge and just distribution of benefits as critical to ethical secondary use of health information obtained from patients, whether or not the data have been de-identified.
Speaker: Professor Leslie Francis, Alfred C. Emery Professor of Law, University of Utah
Biography: Leslie Francis, is Distinguished Professor of Philosophy and Law and Alfred C. Emery Professor of Law at the University of Utah. At Utah, she also holds adjunct appointments in the Department of Internal Medicine in the Division of Medical Ethics, in the Department of Political Science, and in the Department of Family and Preventive Medicine in the Division of Public Health. Francis is co-chair of the subcommittee on Privacy, Confidentiality, and Security of the U.S. National Committee on Vital and Health Statistics and an elected vice-president of the International Society for the Philosophy of Law and Social Philosophy (IVR). Recent publications include Leslie P. Francis and John G. Francis, 2011, “Criminalizing Health Related Behaviors Dangerous to Others? Disease Transmission, Transmission-Facilitation, and the Importance of Trust.” Criminal Law and Philosophy 6(1): 47-63; Leslie P. Francis, 2010, “The Physician-Patient Relationship and a National Health Information Network", Journal of Law, Medicine, and Ethics 38: 36-46; and Margaret P. Battin, Leslie P. Francis, Jay A. Jacobson & Charles Smith, "The Patient as Victim and Vector: Bioethics and Infectious Disease", Oxford University Press, 2009.
Respondent: David Erdos, Katzenbach Research Fellow, Faculty of Law, University of Oxford