April 20, 2018

expert reaction to House of Commons S&T committee report on Genomics and Genome Editing in the NHS

The House of Commons Science and Technology Committee has published a new report:  Genomics and Genome Editing in the NHS.

Dr Julia Wilson, associate director of the Wellcome Sanger Institute, said:

“We welcome the timely publication of the Science and Technology Committee’s report. The Sanger Institute firmly believes that genomics has the potential to transform and improve the healthcare of patients in the UK. The committee have highlighted the need for secure data sharing and recognise the potential commercial benefits that genomics can bring to the UK. Engaging patients and the public on data sharing, the national opt out, and the new data protection laws must be a Government priority if the commercial and healthcare benefits of genomics is to be realised in this country.”

Sir John Chisholm, Executive Chair of Genomics England, said:

“I welcome the House of Commons Science and Technology Committee Report on Genomics and Genome Editing, published today. The report is a thorough and thoughtful exploration of the tremendous opportunities that genomics offers to the UK – its people, its health service and its economy. The Committee also recognises the huge strides that we have made – placing the UK at the leading edge of genomics discovery. As the report stresses, now is the time for the UK to overcome remaining challenges and capitalise on its global leadership − delivering genomic medicine in the NHS, improving patient outcomes and realising economic opportunities across the world.”

Prof Ottoline Leyser, Fellow of the Royal Society and Co-chair of the Data Governance Working Group, said:

“We welcome the findings of this report, which recognises the importance of meaningful conversations with the public that inform how we develop these technologies, as well as strong data governance to keep the United Kingdom as a world leader in genomic medicine and the development of new digital technologies.

“The Royal Society believes that, where there is value in accessing data that cannot be open, like medical data, we need frameworks and agreements that facilitate appropriate data sharing while inspiring public confidence. The UK is already well placed to do so, building on the legacy of existing genomic projects and capitalising on the opportunity presented by the creation of the Centre for Data, Ethics and Innovation.

“These technologies aren’t decades away – they are revolutionising our lives right here and right now, and we can only harness the untapped potential of genome editing and data-enabled research if we have the buy-in of the people it is meant to serve. There is already evidence that the UK public is cautiously optimistic about genetic technologies and are broadly optimistic about the human health applications.” * (please see below for further details from the Royal Society)

Sarah Norcross, Director of the Progress Educational Trust, said:

“We welcome this report’s final recommendation in relation to genome editing. It is vital that the UK government considers the most appropriate legal and regulatory framework for genome editing, and is prepared to legislate for possible future advances. Taking the initiative will help to ensure that the UK attracts funding for pioneering research, and retains its genome editing expertise during and after Brexit.”

All our previous output on this subject can be seen at this weblink: http://www.sciencemediacentre.org/tag/genome-editing/

Declared interests

None received.

 * From the Royal Society:

1. Last year the Royal Society found that just one in ten members of the UK public recognised the term machine learning, even though the technology – a form of artificial intelligence – is already part of our everyday lives.

1. In a separate report, a survey for the Royal Society of 2,061 people found that the UK public was broadly welcoming of using genetic technologies to improve human health. While 46% of people indicated that they agreed with the statement that ‘genome editing in general carries too many risks to be used to tackle global challenges’, the public is very positive about its use in specific areas such as human health. 83% of respondents believe that using genome editing as a way of curing an otherwise incurable life threatening condition such as muscular dystrophy would be positive for society. 82% are positive about treating patients with conditions where other treatments are already available such as leukemia, and 73% are positive about the use of genome editing to treat non-life threatening conditions such as arthritis.

1. On data and artificial intelligence, the Royal Society has launched a flagship series of events bringing together experts in the tech industry, academia and civil society to have an open and robust conversation about the potential and pitfalls of the technology.