Title of Presentation
“Challenges for data sharing: old governance meets new technologies”
Date and Place
Madeleine Murtagh is Professor in Social Studies of Health Science She is Head of the Data 2 Knowledge Research Group in the School of Social and Community Medicine, University of Bristol, UK. She leads the Social Studies of (Health) Data Science research programme which brings social science perspectives to understandings and implementation of data governance, utilisation and translation.
Madeleine began her academic career in Australia studying anthropology, sociology and public health examining new developments in health treatment/technologies and how people interact with and make decisions about using those technologies. She is still interested in how people interact with new technologies and leads research into: researcher responses to changing values in science which promote openness and sharing of research data; and, participant, patient and public engagement in health research and technology. She is actively developing methods to support transdisciplinary research collaboration and stakeholder engagement in transforming data into knowledge for health policy and practice. Most recently she has established a national process for fair access to research data and samples called the METADAC and Chair’s its Data Access Committee. Madeleine provides methodological advice to expert committees of MRC/Wellcome Trust, and has sat on the Wellcome Trust Case Control Consortium data access committee and other national and international health policy committees. Her research is funded by the Wellcome Trust, Medical Research Council and Economic and Social Research Council and the European Research Council.
In an earlier incarnation, Madeleine was an amateur theatre director, playwright and ran a small theatre company. Writing is still one her favourite parts of being a research academic.
The social structures that govern data and sample release aim to safeguard the confidentiality and privacy of cohort research participants (without whom there would be no data or samples) and enable the realisation of societal benefit through optimising the scientific use of those cohorts. Within collaborations involving multiple cohorts and biobanks, however, multiple and complex local, national and supra-national institutional and legal guidelines risk impeding the very science which is the raison d’etre of these consortia. We present an ethnographic study which examined the epistemic and non-epistemic values driving decisions about data access and their consequences in the context of BioSHaRE. We demonstrate how the potential analytic flexibility offered by this approach was lost under contemporary data access governance. We identify three dominant values: protecting the research participant, protecting the study, and protecting the researcher. While protection of the research participants was central to access permissions, decisions were also attentive to the desire of researchers to see their efforts in building population biobanks and cohorts realised in the form of scientific outputs. We conclude that systems for governing and enabling data access in large consortia need to: (1) protect disclosure of research participant information or identity; (2) ensure the specific expectations of research participants are met; (3) embody systems of review that are transparent and not compromised by the specific interests of one particular group of stakeholders; and, (4) facilitate data access procedures that are timely and efficient. Practical solutions are urgently needed.