Data Protection Bill [HL] Debate
Full Debate: Read Full DebateBaroness Manningham-Buller
Main Page: Baroness Manningham-Buller (Crossbench - Life peer)Department Debates - View all Baroness Manningham-Buller's debates with the Department for Digital, Culture, Media & Sport
(7 years ago)
Lords ChamberMy 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.
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.
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.
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.
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.