The UK’s 100,000 Genomes Project: manifesting policymakers’ expectations
نویسندگان
چکیده
The UK's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the work of those associated with Genomics England - the company established by the Department of Health to deliver the project. We interviewed 20 individuals linked to, or working for Genomics England. Interviewees had double-edged views about the context within which they were working. On the one hand, policymakers' expectations attached to the venture were considered vacuous "genohype"; on the other hand, they were considered the impetus needed for those trying to advance genomic research into clinical practice. Findings should be considered for future genomes projects.
منابع مشابه
Genomics England’s implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom’s 100,000 Genomes project and the need for public support
The United Kingdom's 100,000 Genomes Project has the aim of sequencing 100,000 genomes from National Health Service patients such that whole genome sequencing becomes routine clinical practice. It also has a research-focused goal to provide data for scientific discovery. Genomics England is the limited company established by the Department of Health to deliver the project. As an innovative scie...
متن کاملThe 100 000 Genomes Project: What it means for paediatrics.
The 100,000 Genomes Project is a unique, national programme combining research and transformation of clinical care, by undertaking Whole Genome Sequencing (WGS) in patients with rare diseases and cancer. Made possible by technological advances in next generation sequencing1 and falling costs, this project aims to find the genes which cause a patient’s rare disease and identify genetic changes w...
متن کاملMeasuring the environmental sustainability of a major sporting event: a case study of the FA Cup Final
Policymakers are increasingly interested in the wider consequences of major sporting events, including their environmental impacts. Indeed, London 2012 included as part of its winning Olympic bid a commitment to measure and take steps to minimize the environmental impacts of the forthcoming Games. This paper demonstrates how the ‘Ecological Footprint’ has been used to measure the environmental ...
متن کاملPublic trust and 'ethics review' as a commodity: the case of Genomics England Limited and the UK's 100,000 genomes project.
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 Gen...
متن کاملManaging incidental and pertinent findings from WGS in the 100,000 Genomes Project
The PHG Foundation is the working name of the Foundation for Genomics and Population Health, an independent charitable organisation (registered in England and Wales, charity No. 1118664 company No. 5823194), which works with partners to achieve better health through the responsible and evidence-based application of biomedical science
متن کامل