Charlie Maynard

It is a pleasure to serve under your chairmanship, Mr Western. I thank the hon. Member for Caerphilly (Chris Evans) for securing the debate, and I thank Ellie for all her work, as well as Hugh and the others who are pushing very hard on this issue—many thanks indeed. I want to try to make this debate a bit broader in two directions. My sister, Georgie, also has a glioblastoma. She was diagnosed two and a half years ago and has been incredibly brave and determined, working with the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh) and Ellie to try to get more brain cancer justice, and driving that debate. That also applies to many people in my constituency of Witney who have brain tumours but also tumours of all sorts of cancers. We ought to be considering two things. First, I ask the Minister to consider making tumour tissue freezing standard for all cancerous tumour tissues, not just brain. However close the issue is to my heart, I think it is inequitable to just focus on brain tumours. We have to try to get all tumour tissues frozen as standard, and the economies of scale mean that makes sense. The other thing is how we have equitable and public health-oriented access to that tissue once it is stored, which we as a country are massively failing on. I ask the Minister to consider reforming the Human Tissue Act 2004, which could be broadened in terms of what is legally permitted in research contexts. That would create explicit legal pathways for retrospective clinical samples. First, clinical tissue, such as biopsies and diagnostic archives, could be routinely made available for public health research under clear safeguards, without requiring separate project-by-project consent. Secondly, requirements for de-identified tissue could be simplified, clarifying that truly anonymised, non-identifiable samples can be used without consent or an HTA licence for a wider range of research, rather than just narrowly defined exceptions. Thirdly, licences could be converted to broader authorisations. Instead of a licence for each tissue bank, accredited biobanks could be allowed to supply samples under nationally recognised frameworks. Fourthly, DNA analysis rules could be reworked. Barriers to genomic public health research could be reduced by redefining or narrowing the offence of having tissue for DNA analysis, provided that strong data protection is ensured. That is one big chunk. The second big chunk I am asking for—there are only two—is that we reform the Human Tissue Act 2004 to apply a default system similar to the one we now use nationally for organ donation to tumour tissue data. To do so, Parliament would need to amend the HTA to introduce a deemed consent regime for residual tumour tissue and derived data. That would be limited to public interest cancer research, with a statutory and simple opt-out, strict purpose limits and enhanced oversight by the Human Tissue Authority. The model would mirror the Organ Donation (Deemed Consent) Act 2019, but apply just to data derived primarily from tumour tissue. In plain English, that means that we have something that works for organ donations and saves lives day in, day out. If any of us die, our organs are taken and our next of kin can opt out if they choose. The great majority of people do not opt out. That has meant that many more organs have been available, which has saved lives. Somebody may want to dispose of their tumour tissue, but the great majority of us do not; we would want it used for public health and science, so having it as an automatic—