Data (Use and Access) Bill [HL]

Debate between Lord Leong and Lord Stevenson of Balmacara

Committee stage
Tuesday 10th December 2024 Grand Committee

[Lord Leong (Lab)]

My Lords, I thank noble Lords for another thought-provoking debate on consent in scientific research. First, let me set out my staunch agreement with all noble Lords that a data subject’s consent should be respected.

Regarding Amendment 70, Clause 68 reproduces the text from the current UK GDPR recitals, enabling scientists to obtain “broad consent” for an area of research from the outset and to focus on potentially life-saving research. This has the same important limitations, including that it cannot be used if the researcher already knows its specific purpose and that consent can be revoked at any point.

I turn to Amendments 71 and 72, in the name of my noble friend Lord Stevenson, on assessments for research. Requiring all research projects to be submitted for assessments could discourage or delay researchers in their important work, as various noble Lords mentioned. However, I understand that my noble friend’s main concern is around NHS data. I assure him that, if NHS data is used for research, individual patients cannot be identified unless either a patient has specifically agreed for that data to be shared or the Health Research Authority has approved an application for this information to be used, informed by advice from the independent and expert Confidentiality Advisory Group. Research projects using confidential patient data are always subject to rigorous governance, including the approval of an ethics committee; the Minister, my noble friend Lady Jones, mentioned this earlier. There are also strict controls around who can see the data and how it is used and stored. Nothing in this clause will change that approach.

I turn to Amendments 81 and 131 on consent. I understand the motivations behind adding consent as a safeguard. However, organisations such as the Health Research Authority have advised researchers against relying on consent under the UK GDPR; for instance, an imbalance of power may mean that consent cannot truly be “freely given”.

On Amendment 79, I am happy to reassure my noble friend Lord Stevenson that references to “consent” in Clause 71 do indeed fall under the definition in Article 4.11.

Lastly, I turn to Clause 77, which covers the notification exemption; we will discuss this in our debates on upcoming groups. The Government have identified a gap in the UK GDPR that may disproportionately affect researchers. Where data is not collected from the data subject, there is an exemption from notifying them if getting in contact would mean a disproportionate amount of effort. This does not apply to data collected from the data subject. However, in certain studies, such as those of degenerative neurological conditions, it can be impossible or involve a disproportionate effort to recontact data subjects to inform them of any change in the study. The Bill will therefore provide a limited exemption with strong safeguards for data subjects.

Numerous noble Lords asked various questions. They touched on matters that we care about very much: trust in the organisation asking for data; the transparency rules; public interest; societal value; the various definitions of “consent”; and, obviously, whether we can have confidence in what is collected. I will not do noble Lords’ important questions justice if I stand here and try to give answers on the fly, so I will do more than just write a letter to them: I will also ask officials to organise a technical briefing and meeting so that we can go into everyone’s concerns in detail.

With that, I hope that I have reassured noble Lords that there are strong protections in place for data subjects, including patients; and that, as such, noble Lords will feel content to withdraw or not press their amendments.

[Lord Stevenson of Balmacara (Lab)]

My Lords, I thank those who participated in this debate very much indeed. It went a little further than I had intended in drafting these amendments, but it has raised really important issues which I think we will probably come back to, if not later in Committee, certainly at Report.

At the heart of what we discussed, we recognise, as the noble Baroness, Lady Kidron, put it, that our data held by the NHS—if that is a better way of saying it—is valuable both in financial terms and because it should and could bring better health in future. Therefore, we value it specifically among some of the other datasets that we are talking about, because it has a returning loop in it. It is of benefit not just to the individual but to the UK as a whole, and we must respect that.

However, the worry that underlies framing it in that way is that, at some point, a tempting offer will be made by a commercial body—perhaps one is already on the table—which would generate new funding for the NHS and our health more generally, but the price obtained for that will not reflect the value that we have put into it over the years and the individual data that is being collected. That lack of trust is at the heart of what we have been talking about. In a sense, these amendments are about trust, but they are also bigger. They are also about the whole question of what it is that the Government as a whole do on our behalf in holding our data and what value they will obtain for that—something which I think we will come back to on a later amendment.

I agree with much of what was said from all sides. I am very grateful to the noble Lords, Lord Kamall and Lord Holmes, from the Opposition for joining in the debate and discussion, and their points also need to be considered. The Minister replied in a very sensible and coherent way; I will read very carefully what he said in Hansard and we accept his kind offer of a technical briefing on the Bill—that would be most valuable. I beg leave to withdraw the amendment.