Public trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project

Samuel, Gabrielle and Farsides, Bobbie (2017) Public trust and ‘ethics review’ as a commodity: the case of Genomics England Limited and the UK’s 100,000 genomes project. Medicine, Health Care and Philosophy, 21, 159-168. (doi:10.1007/s11019-017-9810-1).

Abstract

The UK Chief Medical Officer’s 2016 AnnualReport, Generation Genome, focused on a vision to fullyintegrate genomics into all aspects of the UK’s NationalHealth Service (NHS). This process of integration, whichhas now already begun, raises a wide range of social andethical concerns, many of which were discussed in thefinal Chapter of the report. This paper explores how theUK’s 100,000 Genomes Project (100 kGP)—the catalystfor Generation Genome, and for bringing genomics intothe NHS—is negotiating these ethical concerns. The UK’s100 kGP, promoted and delivered by Genomics EnglandLimited (GEL), is an innovative venture aiming to sequence100,000 genomes from NHS patients who have a rare disease,cancer, or an infectious disease. GEL has emphasisedthe importance of ethical governance and decision-making.However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’entities do not necessarily reflect a space within whichmoral thinking occurs. Rather, the ‘ethical work’ conducted(and displayed) by organisations is more strategic, relating tothe politics of the organisation and the need to build publicconfidence. We set out to explore whether GEL’s ethicalframework was reflective of this critique, and what this tellsus more broadly about how genomics is being integratedinto the NHS in response to the ethical and social concernsraised in Generation Genome. We do this by drawing on aseries of 20 interviews with individuals associated with orworking at GEL.

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