A new report on bioethics, published by the Nuffield Council on Bioethics on 3rd February, has drawn heavily on work carried out by the Mason Institute and its researchers.
The report, ‘The Collection, Linking and Use of Data in Biomedical Research and Healthcare: Ethical Issues’, sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to those approaching a data initiative.
The report included evidence and advice provided by the Mason Institute to a series of consultations and working parties in 2014.
In January 2014, the Mason Institute submitted a major written response to the NCOB’s open public consultation on “The linking and use of biological and health data.”
Additionally, the Mason Institute was commissioned in June 2014, along with colleagues at Swansea University, to produce “A Review of Evidence Relating to Harm Resulting from Uses of Health and Biomedical Data” for the NCOB Working Party on Biological and Health Data and the Wellcome Trust’s Expert Advisory Group on Data Access.
The final NCOB report endorsed the broad conclusion of the commissioned report that: “…relying on compliance with current legal requirements is insufficient to avert harm and that ‘harm’ as currently recognised by authorities (the ICO, tribunals and courts) failed to provide a complete picture of how harm resulting from abuse of data is perceived or experienced by individuals” (para 2.49).
The NCOB report also highlighted the Mason Institute’s work with the Scottish Health Informatics Programme (SHIP) as an instance of good governance practice.
Such an endorsement is a major next step for the Edinburgh Law School’s REF2014 research case study on Good Governance for the Scottish Health Informatics Programme, showing its on-going impact and relevance in finding answers to emerging questions around new technologies.