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

Research output: Contribution to journalArticlepeer-review

Gabrielle Natalie Samuel, Bobbie Farsides

Original languageEnglish
JournalMedicine, Healthcare and Philosophy
Early online date30 Oct 2017
Accepted/In press22 Oct 2017
E-pub ahead of print30 Oct 2017

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Abstract

The UK Chief Medical Officer’s 2016 Annual
Report, Generation Genome, focused on a vision to fully
integrate genomics into all aspects of the UK’s National
Health Service (NHS). This process of integration, which
has now already begun, raises a wide range of social and
ethical concerns, many of which were discussed in the
final Chapter of the report. This paper explores how the
UK’s 100,000 Genomes Project (100 kGP)—the catalyst
for Generation Genome, and for bringing genomics into
the NHS—is negotiating these ethical concerns. The UK’s
100 kGP, promoted and delivered by Genomics England
Limited (GEL), is an innovative venture aiming to sequence
100,000 genomes from NHS patients who have a rare disease,
cancer, or an infectious disease. GEL has emphasised
the 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 which
moral thinking occurs. Rather, the ‘ethical work’ conducted
(and displayed) by organisations is more strategic, relating to
the politics of the organisation and the need to build public
confidence. We set out to explore whether GEL’s ethical
framework was reflective of this critique, and what this tells
us more broadly about how genomics is being integrated
into the NHS in response to the ethical and social concerns
raised in Generation Genome. We do this by drawing on a
series of 20 interviews with individuals associated with or
working at GEL.

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