Victoria Collins

I, too, thank the Minister for advance sight of his statement, and I join the Government in thanking the volunteers who have given researchers access to deeply personal medical records. A very close family member of mine has recently taken the decision to share medical data—although not with UK Biobank—in order to advance such research. It is not an easy decision, but this is such an important cause. Without the many people who have handed over their data, many of the transformational medical breakthroughs of recent years would not have been possible. That is precisely why what has happened is so serious. This is not the first leak from UK Biobank. In March, The Guardian reported that sensitive medical data donated in good faith had been posted online without the consent of donors, and records have now been put up for sale on a Chinese e-commerce site. This is a profound betrayal of the people who trusted this institution with some of the most intimate details of their lives. UK Biobank has sought reassurances that no names, contact details, NHS numbers or phone numbers were leaked. That is reassuring, but the dismissal of privacy concerns shows a shocking lack of understanding of how easily individuals can be identified, especially in today’s world of artificial intelligence and social media. I urge the Government to hold UK Biobank accountable, and to ensure that protocols are followed and that confidential patient data is not shared online. Although we are pleased to see a quick and full response from the UK Government in this instance, volunteers need more. Will the Secretary of State require UK Biobank to provide a full, step-by-step breakdown of how it will reform its data privacy once and for all? We need not just guidance or reassurance, but binding commitments that this will not happen again, and that includes some of the technical elements. We cannot just rely on people’s commitment not to download something; the technical barriers should be there. Will the Government ensure that any new guidance strikes the right balance between enabling vital research and guaranteeing watertight protections for patient data? Such data is vital for research, which is so important for the future. Finally, has UK Biobank even offered an apology to its volunteers? We cannot find one, so we are calling on UK Biobank to issue a full apology without delay. People gave their data to save lives, and they at least deserve accountability.