(7 years, 1 month ago)
Lords ChamberIt might have been. The noble Lord has exposed a much greater issue than we thought we were grappling with. The case has now been well made that there are four pillars rather than the three that I adumbrated before. We seem to have a case for special treatment. I am sure that the noble Lord, Lord Patel, with his assiduous workload and high work rate will have made this point several times to officials and Ministers. However, if he is not getting the answers he needs, we have a bit of a problem here, so I hope that the Minister will be able to help us on that.
This goes back to an earlier debate about the public interest. It again worries me—I think the noble Lord, Lord Clement-Jones, touched on this—that “public interest” is becoming an overworked term for rather too many issues. In other words, the argument here is not about the public interest at all; it is about the public good that would come from a differential approach, safeguarded by the ethics approach—I said that was new to me and I am grateful to hear about it—and about reinforcing the contribution that would make to an industrial strategy covering a much broader range of understanding about what we are doing, thus making this country a world centre for all that. So there is a power behind this that I had not appreciated and I am grateful to the noble Lord for explaining it. It is easy to analyse it in this way and come up with the answer that he might want, but is it the right way forward on this?
The noble Lord was wise to point out that there are constraints within the GDPR and limits on what the Government can do, but it must be possible to think more creatively about the problem that has come forward. If, as the noble Lord said, the GDPR opens up the question of not requiring consent in that very formal sense, and we are looking for an evidence-led policy initiative which addresses the public good, it behoves Ministers to think very carefully about how one might take it forward.
This may or may not be the only issue that requires this sort of approach, but the case has been made on its merits that more needs to be done. Listing existing bodies that are not included, to put it in the positive, in a list of issues—for example, the administration of justice is a function of the Houses of Parliament—is not the way into this issue. I appeal to the Minister to think creatively about this because it seems to me that we need a new approach here. I am very convinced by that and look forward to hearing what the Minister says.
My Lords, first, I thank the noble Lord, Lord Patel, for his insightful remarks and for providing us with evidence of his knowledge of this subject, and of the Bill’s potential implications for pioneering medical research. I am grateful to him for sharing his expertise on these issues. I am also grateful to the noble Baroness, Lady Manningham-Buller, who speaks on behalf of the Wellcome Trust. Other reputable medical research organisations and universities have also expressed concern about this issue. I understand about the issue of consent and whether it is GDPR-compliant.
On the concerns the noble Lord raised in relation to Clause 7, I mentioned at Second Reading, and on a previous group of amendments, that the list of tasks in Clause 7 is deliberately designed to be indicative and non-exhaustive. When I wrote to noble Lords after that debate, I committed to make this clearer in the Explanatory Notes and the Government will honour that commitment.
The noble Lord, Lord Stevenson, mentioned that we might have to have a new approach to this problem. We are happy to think about these issues. At the moment we find that it is difficult to expand Clause 7 to cover every scenario where personal data has been processed in the public interest. Each addition to the list, however justified on its own merits, would cast greater uncertainty on the public interest tasks that continue to be omitted. However, I can reassure universities and research groups carrying out legitimate medical research, that, in the Government’s view, such tasks are in the public interest for these purposes. I will come later to how we take this forward.
My Lords, the Minister gave the impression that medical research of the type described by the noble Lord, Lord Patel, was encompassed, or allowable, by the GDPR. Can he give chapter and verse on where in the mixture of article 6 and article 9 that occurs? That would be extremely helpful. I understand that obviously the Minister was also agreeing to look further in case those articles did not cover the situation, but it would be good to know which articles he is referring to.
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.
I think we have already made the point and we do not need to come back to it. What I took from the noble Lord’s earlier contribution was that one way in which medical research is developed and carried out involves a consent process, and we would not want to change anything in that sense. However, for lots of reasons—the noble Lord gave three or four—you cannot always use consent. You may not want to go to the patient, or perhaps you cannot go to or find the patient. Alternatively, the noble Lord made the more general point that you often collect data without any real sense of where it might go in the future. We are not saying that any of that is good, bad or indifferent—one is no better than the other—but they all need to be considered in a broader understanding of the public good being best served by having the least restrictive system concomitant with appropriate procedures being in place. That is the line, with the ethics committee sitting at the top, that gets you to the point where that would be a fruitful conversation to have with Ministers.
My Lords, I associate myself with the amendment in the name of the noble Baroness, Lady Howe. We are in Committee and it is a probing amendment. When we discussed it with colleagues the feeling was that 13 might be the right age but, as the noble Baroness indicated, it needs probing and some thinking about.
There is a danger, particularly in a House with our age group, that we assume these technologies are understood by the young—even the very young. We all hear anecdotes of parents or grandparents who have to consult their eight year-olds on how to make various gadgets work, but that misses the point. A frightening amount of information is being freely given. I mentioned at Second Reading that my generation and my parents’ generation had thoughts of personal privacy that my daughter and her contemporaries seem to have no thought of. They are very happy to exchange information about themselves, what they do and where they are with gay abandon.
When we get to the very young it is very important to make sure—we will discuss this in later amendments, if not tonight—that there is sufficient understanding and information to make informed choices, otherwise we get into very dangerous territory indeed. Therefore we are, not for the first time, in the noble Baroness’s debt for raising these questions. Late as it is, it is right that we put on record that these things, along with the amendments that will follow in the next couple of groupings, need to be taken as a whole before we make a final judgment as to the right age.
My Lords, I echo the comments of the noble Lord, Lord McNally, to say we are grateful to the noble Baroness, Lady Howe. I acknowledge, particularly after her Second Reading speech, that she has not immediately demanded that the age be put back up to 16, which I thought she might. She has produced an interesting amendment.
Amendment 16 would give the Information Commissioner the power to determine the age threshold at which children can consent to their data being processed by online information services. This would be based on consultation and evidence. While it is certainly a preferable proposal to a blanket increase to 16, I am afraid I still cannot agree.
First, the Information Commissioner’s role as an independent regulatory authority is to administer and enforce the application of data protection legislation. As part of that role the Commissioner provides advice to businesses, organisations and individuals on the proper implementation of the legislation and on their rights under that legislation, and provides redress for breaches of individuals’ personal data. It also has an advisory function in relation to Parliament, the Government and other institutions. By contrast, the question of affixing the age below which parental consent is required has much broader-ranging considerations and implications, including an important moral dimension. Requiring the Information Commissioner to be the one to answer it would place on the officeholder an extra demand for which the office is neither designed nor resourced.
Secondly, the GDPR specifies that it is member states that should make this important decision. It does not give the power for states to delegate this choice to another regulatory body. Therefore, this amendment would make the Bill as a whole non-compliant with the GDPR. It is for those reasons that the Government consider that the question should be decided by this House and the other place rather than by a regulatory body. I realise that, in saying that, we leave ourselves open to further discussions on this matter.