Unlocking the genome: can the NHS make progress without political leadership?
Whatever one’s views of David Cameron, it is unquestionable that he used his premiership to champion genomic science and its use in the NHS – arguing repeatedly that it would deliver better tests, better drugs and better care. The 100,000 genomes project stands today as one of the better parts of his legacy. And his departure leaves the genomics agenda looking a little leaderless.
Last week’s Festival of Genomics would have been a home crowd for the former Prime Minister. The Festival is part of a programme of global conferences that bring together academia, biopharma and healthcare leaders to explore the power of the genome. And it would have been a good stage for a current politician to champion the enormous potential the genome offers – although perhaps unsurprisingly the who’s who of genomics who gathered there seemed unperturbed by the absence of one. (To be fair to the organisers, they might not even have invited a politician.)
There was of course a high degree of consensus that genomics has the potential to transform our health system. Through, for example, “chromosome commissioning”, where services can be commissioned more efficiently through information about a particular region’s genomic data. Through “genetic general practice”, where GPs have fuller information about any genetically-linked disorders their patients have. And through “personalised public health”, where genomics can be used to predict, understand and prevent diseases.
But although this potential may be left unchanged by the political turbulence, the task of bringing it to bear in the NHS might well have been disrupted.
This is because there are political nettles that have to be grasped. Data sharing, for example, and creating the general conditions in which people are comfortable with – and give their consent to – their genetic data being utilised across the NHS. Addressing ethical questions, concerning how the NHS handles the genetic information it collects (if our DNA dictates that we will die early from an untreatable condition, for example, and the NHS knows this, is it ethical or not for us to be told?) And regulation: will it be acceptable for government to create a more permissive environment to licence the use of emerging genomics-based therapies? (Ironically for David Cameron, Brexit might make this task slightly easier.)
Last week’s conference brought together an entire community – from scientists to regulators – committed to making progress on these issues. England’s Chief Scientist Sue Hill described genomics as a ‘moon-shot moment’ and insisted that there can be no plan B for the NHS. The Government’s Chief Medic Dame Sally Davies signalled once again that her forthcoming – albeit slightly delayed – report will open up these issues to the public debate they deserve.
But this debate will not be won by experts alone (a lesson of Brexit). The void created by David Cameron’s departure has left a gap where political leadership should be – and it remains to be seen if Theresa May’s talk of creating a ‘Global Britain’ leading the world on science and innovation will translate into something approaching her predecessor’s enthusiasm for genomics.
What is clear, however, is that without this political leadership emerging, there is a risk the NHS will not be given the political cover to make full use of all that genomics has to offer.
Originally posted Feb 9, 2017 on Incisive Health blog