The Secretary of State for Health and Social Care, Matthew Hancock, has discussed the opportunities and challenges facing the new NHS Genomic Medicine Service in his speech to the Royal Society on 20th March 2019.
Mr Hancock praised the UK’s world-leading status in gene therapy following the successful achievement of the 100,000 Genomes Project in December 2018, however he also highlighted several challenges that must be urgently addressed.
With regards to data blockage:
‘It’s outrageous that too often, anonymised data, paid for by taxpayers, donated by the public, can’t be used for research . . . We will unlock that data because we know it saves lives.’
With regards to a robust ethical framework:
‘When it comes to editing the human genome, that raises major new ethical questions. I don’t believe in a blanket ban on genome editing research . . . but I fully understand, and recognise the real and genuine concerns and fears, that people have, and we must put in place an ethical framework to govern it.’
And with regards to operational issues:
‘How do we train up doctors and nurses so they understand genetic data, including these new predictive tests, and are able to explain it in a way that helps people make the best decisions?
For some people there will be a big psychological impact from finding out news they weren’t prepared for. We already provide support and counselling to people, but we must ensure that provision keeps pace with the expansion of predictive testing.’
For further information, please read the full transcript of his speech to the Royal Society here.