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
Gabrielle Natalie Samuel, Bobbie Farsides

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 fr...Continue Reading

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Dec 15, 2017·New Genetics and Society·Gabrielle Natalie Samuel, Bobbie Farsides

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Citations

Mar 1, 2018·Frontiers in Pediatrics·Elizabeth ForsythePhilip L Beales
Jan 27, 2018·The British Journal of General Practice : the Journal of the Royal College of General Practitioners·Nadeem QureshiHuon Gray
Jul 1, 2017·Journal of Genetic Counseling·Felicity K BoardmanFrances E Griffiths
Feb 15, 2018·European Journal of Human Genetics : EJHG·Michael P MackleyElizabeth Ormondroyd
Oct 20, 2018·Archives of Disease in Childhood·Christopher VeritySameer Zuberi
Sep 30, 2018·Archives of Disease in Childhood·Wen Y DingAthimalaipet V Ramanan
Apr 26, 2019·Journal of Medical Genetics·Sabrina TalukdarUNKNOWN UK Association for Clinical Genomic Science and UK Cancer Genetics Group
Feb 14, 2020·Genome Biology·Glenn HickeyBenedict Paten
Jan 11, 2020·European Journal of Human Genetics : EJHG·Lisa M BallardAnneke M Lucassen
Mar 27, 2019·Journal of Clinical Pathology·Scarlet BrockmoellerKeith D Hunter
Sep 17, 2020·Ethics & Human Research·Agata FerrettiEffy Vayena
May 1, 2020·Frontiers in Cardiovascular Medicine·Matthew E Fenech, Olly Buston
Aug 10, 2018·European Journal of Human Genetics : EJHG·Pascal PujolDavid Geneviève
May 11, 2018·Medicine, Health Care, and Philosophy·Henk Ten Have, Bert Gordijn
Mar 19, 2021·Journal of Empirical Research on Human Research Ethics : JERHRE·Gabrielle SamuelGemma Derrick
May 2, 2021·BMC Medical Ethics·Agata FerrettiEffy Vayena
Aug 25, 2021·Journal of Medical Ethics·Charalampia Xaroula KerasidouStephen Wilkinson
Oct 6, 2021·Journal of Bioethical Inquiry·Gabrielle SamuelHeilien Diedericks

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Software Mentioned

NVivo
GEL

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