Genomics and genome editing in the NHS Third report of session 2017-19

20th April 2018

Excerpt from report (pg 31-32):

71.Professor Chinnery, of the University of Cambridge, and Fiona Murphy, of the Scottish Genomes Partnership, noted that obtaining consent from those participating in the 100,000 Genomes Project had not been problematic.206 However, such observations relate to cohorts of patients with specific diseases and who received substantial guidance through the consent process, which our witnesses agreed would be too demanding for routine genomic sequencing. Dr Burton thought that awareness among the general public of the “absolute critical need for data sharing” was insufficient.207 A recent survey of the general public conducted by the Wellcome Sanger Institute found that 82% had either never heard of the term ‘genomics’ or had little understanding of it. 208

208 Middleton A. Socialising the genome: making genomics resonate. F1000Research 2018, 7:149 (doi: 10.7490/f1000research.1115249.1)

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Parliament. House of Commons Science and Technology Committee. 20 April 2018. Genomics and genome editing in the NHS Third report of session 2017-19. HC 349. London: The Stationary Office. Reference 208, pp 31-32