Data Protection Bill [HL] — House of Lords, 2017-10-10
Topic: Health
Elizabeth Manningham-Buller (Crossbench, Unknown): My Lords, I will be brief, as the late Lord Walton always said at the start of his speeches. However, I actually mean it. That is because many of the points I want to make have been made by either the noble Baronesses, Lady Neville-Jones or Lady Ludford, or my noble friend Lord Patel, who declared my interest as chair of the Wellcome Trust for me. For those noble Lords who are not familiar with the organisation, we spend about £1 billion a year on improving human health, largely through funding medical research, primarily in this country but also in 16 other countries overseas. We welcome the Bill, although we think it needs improvement. Before Committee, we look for answers to the questions laid out by my noble friend Lord Patel on the need for universities to have real clarity about how they process data For the public interest, terminology should be extended so that we can look at issues of safeguards beyond consent and make sure that it is possible to do clinical trials and interventional work. Why is that the case? It is because health data offers the most exciting opportunities to do things which we have only recently been able to do, understand the causes of disease in detail over populations and have a much better chance of getting to diagnosis early. We could deal with many things if we could only diagnose them far earlier and develop treatments for them—indeed, prevent some of them ever materialising. Health data also helps us to measure the efficacy of treatment. We all know of plenty of treatments that over years have proved to be useless, or unexpected ones that have proved to be outstanding. Looking at big-scale data helps us to do that. That data helps in precision medicine, which we are all moving towards having, where the drugs we receive are for us, not our neighbour, although we apparently both have the same illness. Health data can also help with safety as you can collect the side-effects that people are suffering from for particular drugs. It helps us evaluate policy and, of course, should help the NHS in planning I know that the Government want to support scientists to process data with confidence and safety. The industrial strategy comments that data should be "appropriately accessed by researchers". "Appropriate" is a hopeless word; we do not know what it means, but still. The document also states that access for researchers to, "currently available national datasets should be accelerated by streamlining legal and ethical approvals" We are not there yet I want to say a word about public support. The Wellcome Trust commissioned an Ipsos MORI poll last year before the Caldicott review to assess public support for the collection of data. In many cases, there is significant public support for that provided it is anonymised—although I know there are questions about that—but what people are fussed about is that their data is sold on for commercial purposes, that it is used for marketing or, worst of all, that it is used to affect their insurance policies and life insurance. Therefore, we need to give reassurance on that. However, it has certainly been the case in our experience, and that of many universities, that you can recruit many people for trials and studies if they believe that their data will help others with similar diseases or indeed themselves My noble friend Lord Patel trailed that I would mention the UK Biobank, as this will face real problems if this legislation is not amended. For noble Lords who are not aware of it, the UK Biobank is funded partly by the Wellcome Trust and partly by the Government through the Medical Research Council. Between 2006 and 2010, it recruited half a million people who gave body samples, details about their lifestyles, economic environments and genomes. Some of these details have been accessed but not all. This has produced the most fantastic amount of data, which is helping us to discover causes of cancer, heart disease—there is a long list, and I will read them all out as they are all important—stroke, diabetes, arthritis, osteoporosis, eye disorders, depression and dementia. Other subjects will be added. The conclusions of this data are open to anybody in the world because health has no frontier. There is no other biobank like this in the world. The Chinese have started one called the Kadoorie, but it is neither as extensive nor profound; it will become invaluable, but it is not yet. The UK Biobank is a unique resource for the world. It is based in Oxford and funded by a major British charity and the taxpayer. We must make that data useful and do nothing to damage the way in which it contributes to helping save lives.