Abstract
Genomic medicine has captured the imaginations of policymakers and medical scientists keen to harness its health and economic potentials. In 2012, the UK government launched the 100,000 Genomes Project to sequence the genomes of British National Health Service (NHS) patients, laying the ground for mainstreaming genomic medicine in the NHS and developing the UK's genomics industry. However, the recent research and reports from national bodies monitoring genomic medicine's roll-out suggest both ethical and practical challenges for health-care professionals. Against this backdrop, this paper, drawing on qualitative research interviews with general practitioners (GPs) and documentary analysis of policy, explores GPs' views on mainstreaming genomic medicine in the NHS and implications for their practice. Analysing the NHS's genomic medicine agenda as a 'sociotechnical imaginary', we demonstrate that whilst sociotechnical imaginaries are construed as collectively shared understandings of the future, official visions of genomic medicine diverge from those at the forefront of health-care service delivery. Whilst policy discourse evokes hope and transformation of health care, some GPs see technology in formation, an unattainable 'utopia', with no relevance to their everyday clinical practice. Finding space for genomics requires bridging the gap between 'work as imagined' at the policy level and 'work as done' in health-care delivery.
Highlights
Genomic medicine and its associated complex technologies of whole-genome sequencing (WGS), molecular analysis, adaptive clinical trials and targeted treatments are perceived as offering wide- ranging transformative health-care potentials, including diagnosis and treatments of cancers, other rare or previously undiagnosable diseases (Erikainen & Chan, 2019; Hallowell, 1999; Kerr et al, 2019) such as Leopard syndrome
In 2012, the UK government funded the development of the 100,000 Genomes Project (100KGP), through a collaboration with Genomics England, a private limited company owned by the Department of Health
We argue mainstreaming genomic medicine in the National Health Service (NHS) is a reiteration and enacting of a particular UK sociotechnical imaginary relating to expectations of healthy futures
Summary
Genomic medicine and its associated complex technologies of whole-genome sequencing (WGS), molecular analysis, adaptive clinical trials and targeted treatments are perceived as offering wide- ranging transformative health-care potentials, including diagnosis and treatments of cancers, other rare or previously undiagnosable diseases (Erikainen & Chan, 2019; Hallowell, 1999; Kerr et al, 2019) such as Leopard syndrome (see Genomics England participants stories). The 100KGP is lauded a success by the NHS (DoHSC, 2018) and is used as a template for mainstreaming genomics in the wider NHS, the extent of this perceived success is debatable (Samuel & Farsides, 2017; van Beers et al, 2018) and not addressed in this paper These developments were preceded by significant sociological interest. Lipmann's (1991) geneticisation thesis predicted a future approach to health heavily informed by genetic technologies In this journal, Conrad and Gabe (1999) examined the future implications of the Human Genome Project (HGP), whilst Petersen (2005) examined biobanks’ role in securing genetic health. The emerging research is examining the ethical (Ballard et al, 2020; Dheensa et al, 2016), clinical (Dheensa et al, 2018; Samuel et al, 2017) and policy (Samuel & Farsides, 2017) implications of the 100KGP
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