A social licence for research using big data: an empirical ethics study
Population level research requires access to individual level data on a very large scale. The scale of this enterprise means that the ethical models of consent, approach and access to data and records that are usually employed are inapplicable or impractical. This DPhil project will explore the alternative idea of a social licence for managing the ethical issues in healthcare research using big datasets.
The idea of a social licence is intended to capture a distinctive kind of social buy-in or social sanction which enables institutions possessing it to conduct research that is taken to be ethically legitimate. This idea has important conceptual connections within ethics and social science, but in each case these connections have not been developed and explored in a practical context and in particular, in the context of large scale research using population level data. This DPhil project will investigate the ethical and social foundations of the concept of a social licence. It will ask questions such as: What is a social licence for research and how is it justified? How might this vary in the contexts of genomic medicine, Big Data and the longitudinal patient records? Is there variation in stakeholder, patient and public understandings and the perceived acceptability of (i) NHS record use for research, (ii) the use of Big Data strategies and techniques in health research and (iii) the use of population level genomic data for research and how is a social licence related to trust, trustworthiness, accountability and transparency?
Research Experience, Research Methods and Training
The project will involve both ethical and social scientific methodologies, combined in innovative ways so as to be in a position to contribute to the emerging field of empirical bioethics. If the candidate does not have appropriate methods training they will be able to audit courses appropriate courses within the university.
Field Work, Secondments, Industry Placements and Training
Field work (interviews/focus groups/observations) will most likely be around Oxford, for example, in the Big Data Institute, and other data sharing networks established through the NIHR Health Informatics Collaborative and Academic Health Science Network.
Sociologist, anthropologist – with a sustained interest in philosophical ethics – or a philosopher, bioethicist – with a sustained interest in social science.