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

摘要: 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 integration, which has now already begun, raises wide range social and ethical concerns, many were discussed in final Chapter report. paper explores how 100,000 Genomes Project (100 kGP)—the catalyst for bringing NHS—is negotiating these concerns. 100 kGP, promoted delivered by Genomics England Limited (GEL), is an innovative venture aiming sequence genomes from NHS patients who have rare disease, cancer, or infectious disease. GEL emphasised importance governance decision-making. However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’ entities do not necessarily reflect space within moral thinking occurs. Rather, ‘ethical work’ conducted (and displayed) more strategic, relating politics organisation need build public confidence. We set out explore whether GEL’s framework was reflective this critique, what tells us broadly about being integrated response concerns raised Genome. drawing series 20 interviews with individuals associated working at GEL.