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Ethical Quandaries: Blurred Boundaries and Transformations in Genomic Medicine

Ethical Quandaries: Blurred Boundaries and Transformations in Genomic Medicine

11 June 2019


Room 210 Medical Teaching Building, University of Sussex, BN1 9PX

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The BSA South-Coast Medical Sociology Study Group in conjunction with the Wellcome Trust funded EPPiGEN Project are delighted to announce the next regional symposium.

Guest speakers 

Professor Kate O’Riordan (University of Sussex)
Gabrielle Samuel (King's College London)
Professor Felicity Boardman (University of Warwick)


Speaker 1: Scientists, publics and genetically edited humans in the media
Professor Kate O’Riordan (University of Sussex) 

This presentation provides an overview of press coverage of Crispr-Cas9 with a focus on two key periods: the announcement in 2013 that the UK was using Crispr in embryo research; and the 2018 announcement of live births in China. I examine the figures of Dr Kathy Niakan and Dr He Jiankui as well as that of the public in this coverage. This opens up questions about the governance of Crispr and human genetic modification. UK News in this area is often constructed through a positive, anticipatory account of the genetic modification of embryos. I draw out the ways in which both scientists and global publics are constructed as potential obstacles to, or supporters of the use of Crispr. Much of this coverage has echoed the strategies seen in debates around stem cell research in the previous decade. For example, boundary management positions UK science against problematic science elsewhere, women as key to legitimation, delimits research from reproduction and stresses the rigour of the UK regulatory framework. However, the boundary management between research embryos and live births in the Crispr coverage challenged this mapping, whilst conversely strengthening an emerging consensus in this area that societies are ready for genetically modified humans. 

Speaker 2: The 100,000 Genomes Project: a case study of “ethical quandaries” emerging from genomic medicine 
Dr Gabrielle Samuel (Kings College London)

On 4 July 2017, the Chief Medical Officer, Dame Sally Davies, published her Annual 2016 Report, Generation Genome, which focused on her vision to integrate genomics into the NHS. The catalyst for this vision was the Department of Health’s 100,000 Genomes Project, the ambition of which was to two-fold: to bring whole genome sequencing into routine practice and to provide genomic data for research purposes. The 100,000 Genomes Project was established in the wake of the now defunct care data initiative, and as such it was imperative to ensure public trust in the project from the outset. The project had a strong public engagement strategy, a bioethicist as a non-executive member of the board, and various ethics-related committees to inform decision-making. As such, the initiative makes for an interesting case study of how this strategy to be seen as an “ethical” organisation was realised “on the ground”. This presentation draws on a series of interviews with individuals working with, or associated with Genomics England, the company which delivered the Genomes Project. It explores how ethical quandaries surrounding the implementation of genomics into the NHS were discussed and negotiated, and also highlights broader ethical tensions of genomic medicine in terms of innovation, value and social justice. 

Speaker 3: Living with the genome: disability, impairment and suffering in a genomic age
Professor Felicity Boardman (University of Warwick) 

Genomic medicine is currently grappling with complex decisions about which genetic conditions are ‘serious’ in order to filter and prioritise the swathe of genetic variant data that is emerging from sequencing analysis. For this reason, the way that severe disease- and indeed suffering- are defined is becoming increasingly important, due to their role within such decisions, that ultimately determine which results genomic medicine patients receive, and which they don’t. However, social understandings of disease severity and suffering, and the lived realities that underpin them, do not always align with clinical definitions of these concepts. This presentation provides first-hand insight into the lived realities of genetic disease, through qualitative interview data and quantitative survey data from people affected by a range of genetic conditions with varying presentations (thalassaemia, fragile x conditions, spinal muscular atrophy, cystic fibrosis and haemophilia). The inherently complex and multi-faceted nature of disease severity and suffering as they are both lived and socially framed will be presented, as well as a consideration of the extent to which these lived experiences relate to, and are reflected within, clinical definitions of genetic disease. Finally, the implications of the continued expansion of genomic medicine for genetically disabled people, as well as wider society, will be considered, within a context where genomic sequencing is increasingly being implemented at population level around the globe. 

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