Genomic Data Integration into data safe havens (GeDI)

Research Themes

Project Overview

Using genetic data with routine health data holds untold potential for research, but it is vital to safeguard privacy and maintain data utility, so the benefits can be gained while meeting ethical and legal obligations.

The main aim of GeDI is to explore the issues pertaining to the integration of genetic data into data safe havens, particularly the SAIL Databank, and its linkage to anonymised, routinely collected health-related data for research.

Our findings will inform working relationships between Health Care and Research Wales (HCRW), the Wales Gene Park, the All Wales Medical Genetics Service, specific research groups with genomic datasets, the SAIL Databank, and more widely.

Project Outcomes
Collaborative / Industry Partners
Publications
Related Courses

Project Outcomes

We used a multi-faceted approach drawing upon: data governance arrangements in published research; case studies of organisations working with genomic and phenotypic data; public views and expectations; and example studies using genomic and phenotypic data in combination. The findings were contextualised against a backdrop of legislative and regulatory requirements and used to create recommendations.

From this, we proposed recommendations towards a risk-utility model with a flexible suite of controls to safeguard privacy and retain data utility for research. These are presented as overarching principles aligned to the core elements in the data sharing framework produced by the Global Alliance for Genomics and Health, and practical control measures distilled from published literature and case studies of operational safe havens to be applied as required at a project-specific level.

The recommendations presented can be used to contribute towards a proportionate data governance framework to promote the safe, socially-acceptable use of genomic and phenotypic data in safe havens. They do not purport to eradicate risk, but propose case-by-case assessment with transparency and accountability. If the risks are adequately understood and mitigated there should be no reason that linked genomic and phenotypic data should not be used in anonymised form for research in safe havens.

Collaborative / Industry Partners

Wales Genomic Medicine Centre

Publications

Jones KH, Daniels H, Squires EL and Ford DV (2019) Public views on models for accessing genomic and health data for research: a mixed methods study. J Med Internet Res (in press). doi:10.2196/14384 http://dx.doi.org/10.2196/14384

Jones KH, Daniels H, Heys SM, Lacey AS and Ford DV (2020) Towards a risk-utility data governance framework for research using genomic and phenotypic data in safe havens: multifaceted review, J Med Internet Res 2020;22(5):e16346, DOI: 10.2196/16346

Research Centres

Secure Anonymised Information Linkage (SAIL) Databank

Project Contact

To find out more about this project, please contact:

Prof Kerina Jones
k.h.jones@swansea.ac.uk

Linking genetic mutation data
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