We need to talk about genomics: delivering a legacy for the NHS

Lucia von Bredow

7 July 2014

In his landmark speech, given at this year’s NHS Annual Confederation Conference, NHS England CEO Simon Stevens shared his plans to harness the coming innovations in modern medicine. His vision – to make the NHS a leader in genomics and personalised medicine – is a bold one and, insofar as it aims to realise the use of genomics in the UK health system, is a goal we at the PHG Foundation support wholeheartedly.

Of particular interest was the announcement of a new competitive tender, inviting teaching hospitals and clinical research centres to join the 100,000 Genomes Project (which was launched as the Genomics England Clinical Interpretation Partnership last Friday) and that there are also plans for a consultation on new models for regional genetics labs intended to “upgrade and industrialise NHS capabilities”.

Ensuring clinical benefits is crucial

While it is clear that an NHS-led commitment to support delivery of the 100,000 Genomes Project is likely to be an integral part of its success, what is less certain at this stage is how the project will translate into lasting benefits for the health system. Resurrecting the need for further clarity about the role which the NHS is expected to play in implementing the project in the long run, it also raises bigger questions about how the Government plans to embed the project within the NHS. In short: has enough consideration been given to a post-2017 legacy ?

My personal feeling is that unless strategies are put in place to enable Genomics England and the NHS to start planning the embedding process together, there is a danger that the true health benefits of the 100,000 Genomes Project may never be fulfilled.

Described by Simon Stevens as “one of the world’s highest profile initiatives”, the 100,000 Genomes Project has played a key role in raising the profile of genomics. The aims of Genomics England are also clearly in line with the ambitions of the PHG Foundation regarding the potential that genomics could achieve: it hopes to use genomics to enable new scientific discovery and medical insight, ultimately bringing those benefits to patients. We agree with this long-term goal and support the use of genomic tools as they become available, but we believe that the legacy issues require urgent consideration.

Preparing for success

In order to maximise the outputs and translate them into real benefits for patients in a routine way within health services, this thinking has to start now, and it must be underpinned by a commitment from Government. It must specifically address embedding the project into the NHS, both from a practical implementation point of view as to who should take responsibility after 2017, and with an eye on the end goal: growing the scale of the project, ensuring that health professionals from generalist to specialist are able to use genomics effectively, and accumulating genomic data for a longer period of time. In addition, we need to set out what success looks like and how we might measure it.

By making these observations, we do not intend to undermine the project – we believe that it has significant potential and we sincerely want it to succeed. We want to see genomics appropriately embedded in the NHS in a routine way for patients and we believe that more ‘what’s next’ planning will actually improve the chances of this happening. This means that some of the process-driven and highly practical aspects of organisational change which often take place behind the scenes – such as creating diagnostic pathways, producing guidelines, carrying out audits and developing education, along with clinical support and commissioning, must take place parallel to the more front-facing research aspects.

We also believe that the project, and genomics in general, is only one piece of that puzzle – data-sharing and international co-operation must be integral to the debate. Let’s capitalise on a political appetite and NHS-led appetite to translate our “world class genomic science into world leadership in genomic medicine” , but let’s do it properly, creating a lasting legacy for future generations. 

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