Professor Jonathan Montgomery is co-author for the Chief Medical Officer’s Annual Report
Monday 10 July 2017
Professor Jonathan Montgomery, Professor of Health Care Law at UCL Faculty of Laws, is co-author on a chapter on ‘Ethics and the Social Contract for Genomics in the NHS’ alongside Anneke Lucassen, University of Southampton, and Mike Parker, University of Oxford.
The chapter is part of the latest Chief Medical Officer’s Annual Report, published by Dame Sally Davies, The Chief Medical Officer. The report brings together independently authored chapters with an overview from the CMO reflecting on them and making recommendations for future policy.
Professor Montgomery’s chapter draws on ideas from the Human Genetics Commission concerning ‘Genomic Citizenship’, with elements of participation, altruism and solidarity (p 114). This enables the due recognition of common interests, but requires action to protect individual privacy (including improved information governance) and to guard against non-exploitation. It argues that this should be understood as a reframing of the implicit social contract that underpins our health services. It suggests that this can be elaborated through public conversation, as was done when the NHS Constitution was developed.
At the root of this new social contract is a need to revise our understandings of traditional concepts of consent, confidentiality and duties of care. This will need to clarify patient’s rights to control data usage but also when there needs to be collective decision-making. It will also need to determine the responsibilities of health systems to improve information security and governance, including transparency and accountability.
Professor Montgomery has explored some other aspects of these challenges in his recent paper, ‘Data Sharing and the Idea of Ownership’ which is free to access in the journal The New Bioethics.