UK Biobank Data

Lord Lansley Excerpts

Tuesday 28th April 2026 Lords Chamber

[Lord Vallance of Balham (Lab)]

That last point is fundamental: we must have trust. If we do not get trust, we lose the ability to use what is an extraordinary resource, so that has to be part of what is looked at here. It is absolutely part of what the board of UK Biobank is doing in its review, and it needs a very clear look.

When it started, UK Biobank was at the forefront of protection. It had very robust mechanisms to scrutinise researchers and institutions and make sure that this was properly looked after. What has happened is that things have overtaken UK Biobank and it has not kept up, whereas others have put in a secure data platform to try to deal with these issues, so there is a question there. Part of this is because of the sheer size of the database, but it is not excusable, and this needs to be sorted out.

Going back to the point made by the noble Lord, Lord Tarassenko, it is theoretically possible to re-identify people. It is not at all easy, and it is a low probability, but it is not zero probability. Therefore, I agree with the point that this is a real wake-up call for researchers. We need to make sure that we build the right trust in. We are putting together the Health Data Research Service, with this at the very heart of what it is going to do to make sure that there is trusted access to this type of data.

[Lord Lansley (Con)]

My Lords, I declare an interest as a participant in UK Biobank. It is not the first time I have said that: when I was Secretary of State, I said it in the context of encouraging people to support UK Biobank. Does the Minister agree that, notwithstanding this lamentable abuse of the data, those of us who are participants see such value emerging from UK Biobank that we think we should happily continue to volunteer our data and our services whenever we are asked? However, it surprises me, as somebody who has received emails from UK Biobank, that since this was in the press I have received nothing, although it says that it is going to contact all participants and the Statement says so. I am surprised that eight days have gone by and nothing has emerged.

The website of UK Biobank says—the noble Lord, Lord Clement-Jones, referred to it—that it intends to have what it describes as an automated data-checking scheme in place by the end of the year. Can the Minister kindly tell us a bit more? What would that add and why is it important? It seems to me that what we are looking for in this age of AI systems is something which not only prevents unauthorised access but is capable of identifying every subsequent use of that data wherever that data may have been provided under the licence.

[Lord Vallance of Balham (Lab)]

Again, let me thank another participant at UK Biobank. One of the features I have found whenever I have met UK Biobank participants or visitors is how incredibly altruistic everybody is: they want to do it for the common good. That is a very common theme, and I am sure that that is going to be the response now. As for contact, we asked UK Biobank to contact all participants immediately. I understand that it does not have an email address for about half of the participants, so it has written, and I believe it has sent emails to all those it has email addresses for. As to what happens next, I agree that technological changes are so fast that this has to be something that keeps up with that. The first step, I think, is to put in one or two very clear airlocks, before you get to the data, that stop you being able to export the data. That is the immediate concern. Then there are ways in which it is possible to see where data has gone, and these things will be looked at as part of the review that is going on.