Montgomery, JR; Lucassen, A; Parker, M; (2017) Ethics and the social contract for genomics in the NHS. In: Davies, SC, (ed.) Annual Report of the Chief Medical Officer 2016, Generation Genome. Department of Health: London, United Kindom.

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Abstract

In this chapter we have outlined some of the ethical challenges presented by the greater use of genomics in the NHS. We began by noting that the realisation of the important benefits of developments in genomics for patients is going to require significant changes in the ways in which health care is understood, organised and delivered. We picked out three particular aspects as having particular significance: the greater integration and complementarity between research and clinical practice; the central importance of data collection and analysis; and, the increasing role of uncertainty and open-endedness in genomic medicine. Against this backdrop, we have argued that the sustainable achievement of the benefits of genomics requires a broad renegotiation of the social contract for medical research and medical practice in the NHS. We picked out four areas in which this is likely to be particularly important: (1) consent; (2) confidentiality and the care of family members; (3) the duties and obligations of health professionals including laboratory staff; and, (4) system responsibilities and governance.

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