The third event in our ESRC seminar series ‘New Practices for New Publics was on Tuesday 20th September.
Our keynote for this seminar was given by Dr Edgar Whitley from the London School of Economics who spoke about the ethico-legal requirements of ‘privacy’ in healthcare and biobanking research. He presented recent research in which he developed a model of ‘dynamic consent’. We looked at the ethical principles underlying this example through participative discussion with academics and practitioners comparing issues arising in health with those that arise in the voluntary and community sector. We explored practice-based theorising from the perspective of ‘data practice’ looking at the performativity of data collection and the ethical issues that arise in both health research and in voluntary and community sector service provision. Full abstract and author bio below.
Following the seminar at 1.30pm-4.30pm was the ‘Monitoring Evaluation and Impact (MEI) Partnership’ Annual Symposium #2 recent winner of the University of Brighton’s 2016 ‘Excellence in Community Engagement Award’. Bringing together service managers, volunteers and commissioners from across the region’s voluntary and community sector we looked at progress made on our ‘community data burden’ position statement, discussed our collective ‘toolbox’ for knowing communities better and looked at ways to progress dialogue with funders and policy makers on how to make data work for communities.
Full programme for the day available here: http://blogs.brighton.ac.uk/meicommunity/blog/
LISTEN to Edgar’s talk here
ESRC Seminar: Keynote Abstract and Author Biography
Data Practices and Privacy: Exploring dignified community engagement from the perspective of Dynamic Consent
Privacy issues that arise when collecting data from citizens seeking support from the Voluntary and Community Sector (VCS) are rarely considered. Yet, privacy is both a legal and an ethical requirement. This talk will review the legal and ethical challenges of existing VCS ‘data practices’ – that is, what VCS organizations ‘do’ with data – including the role of anonymization. Particularly significant is the role of consent and Edgar will present some of his recent research on ‘dynamic consent’ as a patient–centric approach to working with data, particularly in the context of biobanking and healthcare research. One unanticipated consequence of dynamic consent in such contexts has been a more dignified and effective form of engagement with community. This consequence offers us insight into how VCS data practices relevant to monitoring and evaluation can be effective and dignified.
Author Bio: Dr Edgar A. Whitley
Edgar is an Associate Professor (Reader) in Information Systems in the Department of Management at the London School of Economics and Political Science.
Edgar has a BSc (Econ) and PhD in Information Systems, both from the LSE. Edgar was the research coordinator of the influential LSE Identity Project on the UK’s proposals to introduce biometric identity cards; proposals that were scrapped following the 2010 General Election. Edgar’s research covers privacy, identity policy and dynamic consent. He is a member of the Cabinet Office Privacy and Consumer Advisory Group.