6. 6. Statement: The Genomics for Precision Medicine Strategy

Part of the debate – in the Senedd at 5:13 pm on 13 June 2017.

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Photo of Vaughan Gething Vaughan Gething Labour 5:13, 13 June 2017

Thank you for the comments and questions. I will deal with your last point first. In many areas of scientific endeavour and research, we recognise there are real risks and challenges for the United Kingdom in the Brexit negotiations. We have been upfront about that in the discussions with your party, and in the White Paper that we have and in the ongoing conversations that will need to take place, not just with the research community, but also between the different Governments of the United Kingdom about our approach to that. Actually, we could have an exit that cuts off scientists—or, actually, if not cutting them off, making that collaboration more difficult. Whilst it would be a problem for Europe to be cut off or to make it more difficult to collaborate with scientists from the UK, actually, I think we would have more to lose from that in terms of the store of international knowledge that exists. So, this is definitely in our interests, and there is a lot of interest from a European point of view in maintaining that area of collaboration. None of us should take that for granted. It has to be very much part of the focus of all the Governments of the United Kingdom, about our negotiating position at a UK level, and equally, maintaining those relationships that exist. I recognise the significant concern that exists within the scientific and research community about our future relationship with European partners.

On the broader points you made about financial savings and investing in this area, as I indicated, we invested £2.3 million for Wales to be part of the 100,000 Genomes Project. We are also investing £6.8 million over the next five years in this area, because we do recognise there’s a need for money to go into developing the service. But, equally, there’s something about understanding what happens after that, because, whilst there are medium and longer term savings to be made, we also know that, when new advances are made, they’re often expensive at the initial point in time. And this is a good point in case, because, actually, as the cost comes down, and it's more likely that we can use this in a more broad-based way in medicine and within diagnosing and then making treatment choices—just as we get every new stage of any precision medicine that comes forward, it is often very expensive at the start, and the challenge is how much progress we’re able to make in our understanding and then being able to make that generally therapeutic so we can understand how we then use that practically. But we do know that, through the savings that we’ll make, there'll also be difficult cost choices about new treatments, new therapies, that come on board, and I wouldn't want to try and shy away and pretend this is simply an area of health gain to be made at low cost. There will be difficult choices for you and me and every other politician in this Chamber to make about how and where we make those investment decisions over the rest of this Assembly term and in the future.

Your final point, in which you mentioned about the broad area of genetic counselling, as I mentioned in my statement, we already have a team of genetic counsellors around a range of different conditions, not just the rare diseases and conditions that exist—but, lots of people, as they're going through and choosing to start a family, often there are choices that are made as a standard part of the IVF conversation, if families are going through that. They’ll have a conversation—they'll be referred to genetic counselling and have a conversation about what's possible, and that's an important part of that process. It's getting more mainstreamed as well. I think the challenge for us will be not just how we rely on a specific speciality within the health service, but, actually, how we normalise this as part of the conversation for healthcare professionals. And so, looking at colleagues sat over your right shoulder, in general practice, there’s a need to understand what this looks like, as well as in specialist areas of treatment beyond, and not just with doctors, but actually a whole range of other therapies, to understand, if we're having a conversation about treatment options, how would we, in a sensitive way, understand and lay out potential options for people about what they will choose to do. Because you're absolutely right: different people will make different choices, and this isn't an area where we’ll require people to act in a certain way. But it is how do we have an informed conversation with the citizen about the advances that are possible and how they can understand their potential risks and the informed choices they want to make.

Again, you think about a range of areas in pregnancy and maternity: it's a choice about whether people want to have a range of tests about the health or the nature of their unborn child. And people already make those informed choices, because we've mainstreamed that conversation within our midwifery workforce, and it's done in a sensitive way with new parents. This is about another different level of conversations about different conditions, different risks that may be inherent in who we are and who we could be in the future, about how that conversation takes place in a way that is sensitive and highly professional and equips people to make those individual choices for them and their families.