Data Protection Bill [HL]

Baroness Manningham-Buller Excerpts

2nd reading (Hansard - continued): House of Lords
Tuesday 10th October 2017 Lords Chamber

[Baroness Manningham-Buller (CB)]

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.

Data Protection Bill [HL]

Baroness Manningham-Buller Excerpts

Committee: 1st sitting (Hansard - continued): House of Lords
Monday 30th October 2017 Lords Chamber

[Baroness Manningham-Buller (CB)]

My Lords, it is late and I have little to add to what my noble friend Lord Patel said. I declare an interest as chair of the Wellcome Trust, and I was also closely involved with Imperial until conflicts of interest preventing my going on. I have a lot of sympathy with those who spoke earlier on the issue of fundraising for universities. I speak tonight briefly about the concern I raised on Second Reading: the Bill as drafted just does not offer the clarity we need for people dealing with medical research in universities and other institutions, such as the Crick Institute.

The noble Lord, Lord Patel, amply illustrated the value of such research in understanding fundamental disease, the efficacy of treatment, and following on and learning from big datasets which give us the power to do things in medical research that were once not possible. We are not looking for medical researchers to be given particularly special treatment—there are quite a lot of exceptions here anyway—but to clarify what they are doing and how, so they can do it safely and with confidence.

I come back to where the noble Lord, Lord Patel, started. Researchers need to be able to do this work to improve global health—the health of everyone. Health does not stop at boundaries. Results are shared and we all learn from each other. We heard examples from the noble Lord. In a more parochial sense, this is a critical part of the industrial strategy we need to implement to deal with the economy post-Brexit. That document said that we have to streamline our legal and ethical approvals for medical research. This is one of the ways to get economic growth, so over and above the health aspects, there are strong economic reasons for being sure we can provide absolute clarity for people doing this sort of work. The consent issues are not straightforward but provided there are other safeguards—proper ethical committees and proper supervision—I think we can get there. However, we need to say a bit more in the Bill so that people are confident that they can do this.

[Lord Stevenson of Balmacara (Lab)]

I am conscious that we have had had a full and interesting introduction to this group of amendments from the noble Lord, Lord Patel, which builds on earlier discussions. It was difficult to get into this debate without having a little more than he was able to give us—and I do not want to push him too hard on this, but it would be helpful to hear a bit more about ethical committees.

As I understand it, the argument is a three-pronged one. An additional point was made about the need to think about the industrial strategy and not to hold back the research that will be influential in driving forward our brilliant life sciences. But the issue here is whether we could have a parallel system, changing the nature of the public interest test as described by the noble Lord, Lord Patel, and relying on an agency basis. We are calling that an ethics committee, which will basically take on the burden of determining what is appropriately done outside the narrow scope of the Bill as drafted. It would provide the measures of assurance that the Bill seeks, because it deals with a particular type of operation that would not fit naturally into the GDPR more generally. That is the main burden of the argument. I need a bit more information on how the noble Lord sees ethics committees more generally taking on that burden; perhaps he could share that with us.

--- Later in debate ---

[Lord Ashton of Hyde]

I re-emphasise to the noble Lord that we think these tasks are in the public interest. However, I understand his desire for even more clarity than that. It would be sensible if I wrote to him and to other noble Lords taking part in the debate. I want to make sure that I get the legal basis right rather than just doing it on the hoof, so I agree to write to him and to all noble Lords who have spoken tonight. Again, as I say, we will work towards what I hope will be a more acceptable solution for everyone. Fundamentally, we do not want to impede medical research that is for the public good.

[Baroness Manningham-Buller]

May I correct an impression that medical research does not seek consent? It seeks consent whenever possible, and extensively. However, there are categories where something else is needed. I would not want to leave the House with the impression that there is a substitute for that. In some circumstances we need an additional safeguard.

[Lord Ashton of Hyde]

I believe also that even when consent is obtained, the worry is that it may not be subject to GDPR compliance, even if consent was acceptable before.