LSE research on Dynamic Consent has its origins in a large inter-disciplinary research project into informational privacy, undertaken collaboratively by UK industry and academia. The EnCoRe project ran from June 2008 to April 2012 and included Hewlett Packard Laboratories, HW Communications Ltd, the London School of Economics and Political Science, QinetiQ, the Computer Science Department and the Centre for Health, Law and Emerging Technologies (HeLEX), University of Oxford as partners.
Findings
EnCoRe’s work started with what might be termed “natural consumer behavior”, as it soon became clear that despite the legal and ethical requirements underlying consent, it was unreasonable to expect that all forms of consent would really be informed and freely given, instead consent is often given without individuals reading the terms and conditions of the proposed service or reflecting on the implications of their choice. As a result, EnCoRe came to consider consent as a dynamic (and changeable), rather than static, process.
To achieve this, the project sought to develop scalable, cost effective and robust consent and revocation methods for controlling the usage, storage, location and dissemination of personal data that would offer effective, consent based control over that data and would help restore individual confidence in participating in the digital economy.
In particular, by recognizing that the initially given consent might not have been fully informed or that the consent process might have been engineered to encourage the giving of consent, EnCoRe sought to develop mechanisms that would allow individuals to change their consent preferences over time (for example, when they became more informed about the implications of the choices they had previously made or when their circumstances changed) rather than requiring them to be stuck with the initial consent choices made. Technological measures such as cryptographic ‘sticky policies’ helped ensure that these consent preferences remained associated with the data they referred to.
Impact
Following the completion of the project, work on Dynamic Consent has continued with researchers in Oxford, Manchester and Lancaster, particularly in the context of biobanks and medical research. Particular studies have been undertaken to evaluate donor and medical researcher attitudes to the opportunities that dynamic consent provides and are reshaping the debate around ethical, legal and social issues in biomedical research.
Illustrative publications
Kaye J, Whitley EA, Lund D, Morrison M, Teare H and Melham K (2014) Dynamic Consent – A Patient Interface for 21st Century Research Networks. European Journal of Human Genetics Forthcoming,
Williams H, Spencer K, Sanders C, Lund D, Whitley EA, Kaye J and Dixon WG (2014) Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. Journal of Medical Internet Research Forthcoming,
Whitley EA, Kanellopoulou N and Kaye J (2012) Consent and Research Governance in Biobanks: Evidence from Focus–groups with Medical Researchers. Public health genomics 15(5), 232-242.
Dixon WG, Spencer K, Williams H, Sanders C, Lund D, Whitley EA and Kaye J (2014) A dynamic model of patient consent to sharing of medical record data. British Medical Journal 348, g1294.
Dixon WG, Spencer K, Williams H, Sanders C, Lund D, Whitley EA and Kaye J (2014) Letter: A dynamic model of patient consent to sharing of medical record data. British Medical Journal 348, g1294.
Kaye J, Whitley EA, Kanellopoulou N, Creese S, Lund D and Hughes K (2011) Dynamic consent: a solution to a perennial problem?’ Archived at http://www.bmj.com/content/343/bmj.d6900?tab=responses
Whitley EA (2009) Informational privacy, consent and the ‘‘control’’ of personal data. Information security technical report 14(3), 154-159.
Whitley EA and Kanellopoulou N (2010) Privacy and informed consent in online interactions: Evidence from expert focus groups. In International Conference on Information Systems, St Louis.