Dr Catherine Heeney, University of Edinburgh
Abstract:
The presentation will draw upon work completed with my colleague, Dr Shona Kerr based upon our experience of working with the access committee for Generation Scotland (GS), a biorepository that began recruitment over a decade ago and, which now holds data from the 24,000 plus participants. The GS infrastructure continues to exist and manage access to a repository.
In policy and governance discussions of genetic and genomic data sharing, the rights of research subjects are often balanced against the scientific benefits of allowing open access to biomedical data. However, this dichotomous focus can obscure other matters that are relevant to the ethical running of the biobank. These include the will and the ability to sustain the resource. Generation Scotland (GS) is considered as one context in which a global policy agenda favouring open access meets local issues of governance and sustainability. We seek to address gaps in discussion in scientific, law and policy arenas about the means to ensure open access functions well but often neglects the contextual aspects of biobanking. We explore the balancing of data accessibility with ethical considerations and governance for GS in the evolving policy landscape of the past ten years.
A review of policy documents and academic articles drawn from science and bioethics literatures was carried out with a focus on open access, the protection of data subjects and questions pertaining to sustainability, for example in relation to funding or attribution of credit to repository staff. A further aspect of the methodology is based upon participant-observation within the Generation Scotland Access Committee, of which both authors are members. Via engagement with GS local elements of governance are foregrounded. Whilst decisions around data access are influenced by global policy objectives, local arrangements for governance and practices such as linkage to health records also central. At the local level, it will be argued, moreover, that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise and commitment built up when creating and maintaining repositories such as GS must be taken into account.
Tea/coffee and cakes from 2.45.
All welcome. No registration necessary.
The Cathie Marsh Institute (CMI) provides a focal point at The University of Manchester for the application of quantitative methods in interdisciplinary social science research in order to generate a world class research environment.
This seminar is being in collaboration with the Confidentiality and Privacy (CAPRI) Research Group at CMI:
https://www.cmist.manchester.ac.uk/research/research-groups/capri/
