Data (Use and Access) Bill [HL]

Debate between Lord Clement-Jones and Lord Stevenson of Balmacara

Committee stage
Monday 16th December 2024 Grand Committee

[Lord Stevenson of Balmacara (Lab)]

My Lords, I have co-signed Amendment 137. I do not need to repeat the arguments that have already been made by those who have spoken before me on it; they were well made, as usual. Again, it seems to expose a gap in where the Government are coming from in this area of activity, which should be at the forefront of all that they do but does not appear to be so.

As has just been said, this may be as simple as putting in an initial clause right up at the front of the Bill. Of course, that reminds me of the battle royal we had with the then Online Safety Bill in trying to get up front anything that made more sense of the Bill. It was another beast that was difficult to ingest, let alone understand, when we came to make amendments and bring forward discussions about it.

My frustration is that we are again talking about stuff that should have been well inside the thinking of those responsible for drafting the Bill. I do not understand why a lot of what has been said today has not already appeared in the planning for the Bill, and I do not think we will get very far by sending amendments back and forward that say the same thing again and again: we will only get the response that this is all dealt with and we should not be so trivial about it. Could we please have a meeting where we get around the table and try and hammer out exactly what it is that we see as deficient in the Bill, to set out very clearly for Ministers where we have red lines—that will make it very easy for them to understand whether they are going to meet them or not—and do it quickly?

[Lord Clement-Jones (LD)]

My Lords, the debate on this group emphasises how far behind the curve we are, whether it is by including new provisions in this Bill or by bringing forward an AI Bill—which, after all, was promised in the Government’s manifesto. It emphasises that we are not moving nearly fast enough in thinking about the implications of AI. While we are doing so, I need to declare an interest as co-chair of the All-Party Parliamentary Group on AI and a consultant to DLA Piper on AI policy and regulation.

I have followed the progress of AI since 2016 in the capacity of co-chair of the all-party group and chair of the AI Select Committee. We need to move much faster on a whole range of different issues. I very much hope that the noble Lord, Lord Vallance, will be here on Wednesday, when we discuss our crawler amendments, because although the noble Lord, Lord Holmes, has tabled Amendment 211A, which deals with personality rights, there is also extreme concern about the whole area of copyright. I was tipped off by the noble Lord, Lord Stevenson, so I was slightly surprised that he did not bring our attention to it: we are clearly due the consultation at any moment on intellectual property, but there seems to be some proposal within it for personality rights themselves. Whether that is a quid pro quo for a much-weakened situation on text and data mining, I do not know, but something appears to be moving out there which may become clear later this week. It seems a strange time to issue a consultation, but I recognise that it has been somewhat delayed.

In the meantime, we are forced to put forward amendments to this Bill trying to anticipate some of the issues that artificial intelligence is increasingly giving rise to. I strongly support Amendments 92, 93, 101 and 105 put forward by the noble Viscount, Lord Colville, to prevent misuse of Clause 77 by generative AI developers; I very much support the noble Lord, Lord Holmes, in wanting to see protection for image, likeness and personality; and I very much hope that we will get a positive response from the Minister in that respect.

We have heard from the noble Baronesses, Lady Kidron and Lady Harding, and the noble Lords, Lord Russell and Lord Stevenson, all of whom have made powerful speeches on previous Bills—the then Online Safety Bill and the Data Protection and Digital Information Bill—to say that children should have special protection in data protection law. As the noble Baroness, Lady Kidron, says, we need to move on from the AADC. That was a triumph she gained during the passage of the Data Protection Act 2018, but six years later the world looks very different and young people need protection from AI models of the kind she has set out in Amendment 137. I agree with the noble Lord, Lord Stevenson, that we need to talk these things through. If it produces an amendment to this Bill that is agreed, all well and good, but it could mean an amendment or part of a new AI Bill when that comes forward. Either way, we need to think constructively in this area because protection of children in the face of generative AI models, in particular, is extremely important.

This group, looking forward to further harms that could be caused by AI, is extremely important on how we can mitigate them in a number of different ways, despite the fact that these amendments appear to deal with quite a disparate group of issues.

Data (Use and Access) Bill [HL]

Debate between Lord Clement-Jones and Lord Stevenson of Balmacara

Committee stage
Tuesday 10th December 2024 Grand Committee

[Lord Stevenson of Balmacara (Lab)]

My Lords, I rise to move the amendment standing in my name and to speak to my other amendments in this group. I am grateful to the noble Baroness, Lady Kidron and the noble Lord, Lord Clement-Jones, for signing a number of those amendments, and I am also very grateful to Foxglove Legal and other bodies that have briefed me in preparation for this.

My amendments are in a separate group, and I make no apology for that because although some of these points have indeed been covered in other amendments, my focus is entirely on NHS patient data, partly because it is the subject of a wider debate going on elsewhere about whether value can be obtained for it to help finance the National Health Service and our health in future years. This changes the nature of the relationship between research and the data it is using, and I think it is important that we focus hard on this and get some of the points that have already been made into a form where we can get reasonable answers to the questions that it leaves.

If my amendments are accepted or agreed—a faint hope—they would make it clear beyond peradventure that the consent protections in the Bill apply to the processing of data for scientific research, that a consistent definition of consent is applied and that that consistent definition is the one with which researchers and the public are already familiar and can trust going forward.

The Minister said at the end of Second Reading, in response to concerns I and others raised about research data in general and NHS data in particular, that the provisions in this Bill

“do not alter the legal obligations that apply in relation to decisions about whether to share data”.—[Official Report, 19/11/24; col. 196.]

I accept that that may be the intention, and I have discussed this with officials, who make the same point very strongly. However, Clause 68 introduces a novel and, I suggest, significantly watered-down definition of consent in the case of scientific research. Clause 71 deploys this watered-down definition of consent to winnow down the “purpose limitation” where the processing is for the purposes of scientific research in the public interest. Taken together, this means that there has been a change in the legal obligations that apply to the need to obtain consent before data is shared.

Clause 68 amends the pivotal definition of consent in Article 4(11). Instead of consent requiring something express—freely given, specific, informed, and unambiguous through clear affirmative action—consent can now be imputed. A data subject’s consent is deemed to meet these strict requirements even when it does not, as long as the consent is given to the processing of personal data for the purposes of an area of scientific research; at the time the consent is sought, it is not possible to identify fully the purposes for which the personal data is to be processed; seeking consent in relation to the area of scientific research is consistent with generally recognised ethical standards relevant to the area of research; and, so far as the intended purposes of the processing allow, the data subject is given the opportunity to consent to processing for only part of the research. These all sound very laudable, but I believe they cut down the very strict existing standards of consent.

Proposed new paragraph 7, in Clause 68, then extends the application of this definition across the regulation:

“References in this Regulation to consent given for a specific purpose (however expressed) include consent described in paragraph 6.”


Thus, wherever you read “consent” in the regulation you can also have imputed consent as set out in proposed new paragraph 6 of Article 4. This means that “consent” within the meaning of proposed new paragraph 6(a)—i.e. the basis for lawful processing—can be imputed consent in the new way introduced by the Bill, so there is a new type of lawful basis for processing.

The Minister is entitled to disagree, of course; I expect him to say that when he comes to respond. I hope that, when he does, he will agree that we share a concern on the importance of giving researchers a clear framework, as it is this uncertainty about the legal framework that could inadvertently act as a barrier to the good research we all need. So my first argument today is that, as drafted, the Bill leaves too much room for different interpretations, which will lead to exactly the kind of uncertainty that the Minister—indeed, all of us—wish to avoid.

As we have heard already, as well as the risk of uncertainty among researchers, there is also the risk of distrust among the general public. The public rightly want and expect to have a say in what uses their data is put to. Past efforts to modernise how the NHS uses data, such as care.data, have been expensive failures, in part because they have failed to win the public’s trust. More than 3.3 million people have already opted out of NHS data sharing under the national data opt-out; that is nearly 8% of the adults who could have been part of surveys. We have talked about the value of our data and being the gold standard or gold attractor for researchers but, if we do not have all the people who could contribute, we are definitely devaluing and debasing that research. Although we want to respect people’s choice as to whether to participate, of course, this enormous vote against research reflects a pretty spectacular failure to win public trust—one that undermines the value and quality of the data, as I said.

So my second point is that watering down the rights of those whose data is held by the NHS will not put that data for research purposes on a sustainable, long-term footing. Surely, we want a different outcome this time. We cannot afford more opt-outs; we want people opting back in. I argue that this requires a different approach—one that wins the public’s trust and gains public consent. The Secretary of State for Health is correct to say that most of the public want to see the better use of health data to help the NHS and to improve the health of the nation. I agree, but he must accept that the figures show that the general public also have concerns about privacy and about private companies exploiting their data without them having a say in the matter. The way forward must be to build trust by genuinely addressing those concerns. There must not be even a whiff of watering down legal protections, so that those concerns can instead be turned into support.

This is also important because NHS healthcare includes some of the most intimate personal data. It cannot make sense for that data to have a lower standard of consent protection going forward if it is being used for research. Having a different definition of consent and a lower standard of consent will inevitably lead to confusion, uncertainty and mistrust. Taken together, these amendments seek to avoid uncertainty and distrust, as well as the risk of backlash, by making it abundantly clear that Article 4 GDPR consent protections apply despite the new wording introduced by this Bill. Further, these are the same protections that apply to other uses of data; they are identical to the protections already understood by researchers and by the public.

I turn now to a couple of the amendments in this group. Amendment 71 seeks to address the question of consent, but in a rather narrow way. I have argued that Clause 68 introduces a novel and significantly watered-down definition of consent in the case of scientific research; proposed new paragraph 7 deploys this watered-down definition to winnow down the purpose limitation. There are broader questions about the wisdom of this, which Amendments 70, 79 and 81 seek to address, but Amendment 71 focuses on the important case of NHS health data.

If the public are worried that their health data might be shared with private companies without their consent, we need an answer to that. We see from the large number of opt-outs that there is already a problem; we have also seen it recently in NHS England’s research on public attitudes to health data. This amendment would ensure that the Bill does not increase uncertainty or fuel patient distrust of plans for NHS data. It would help to build the trust that data-enabled transformation of the NHS requires.

The Government may well retort that they are not planning to share NHS patient data with commercial bodies without patient consent. That is fine, but it would be helpful if, when he comes to respond, the Minister could say that clearly and unambiguously at the Dispatch Box. However, I put it to him that, if he could accept these amendments, the law would in fact reflect that assurance and ensure that any future Government would need to come back to Parliament if they wanted to take a different approach.

It is becoming obvious that whether research is in the public interest will be the key issue that we need to resolve in this Bill, and Amendment 72 provides a proposal. The Bill makes welcome references to health research being in the public interest, but it does not explain how on earth we decide or how that requirement would actually bite. Who makes the assessment? Do we trust a rogue operator to make its own assessment of how its research is in the public interest? What would be examples of the kind of research that the Government expect this requirement to prevent? I look forward to hearing the answer to that, but perhaps it would be more helpful if the Minister responded in a letter. In the interim, this amendment seeks to introduce some procedural clarity about how research will be certified as being in the public interest. This would provide clarity and reassurance, and I commend it to the Minister.

Finally, Amendment 131 seeks to improve the appropriate safeguards that would apply to processing for research, archiving and scientific purposes, including a requirement that the data subject has given consent. This has already been touched on in another amendment, but it is a way of seeking to address the issues that Amendments 70, 79 and 81 are also trying to address. Perhaps the Government will continue to insist that this is addressing a non-existent problem because nothing in Clauses 69 or 71 waters down the consent or purpose limitation protections and therefore the safeguards themselves add nothing. However, as I have said, informed readers of the Bill are interpreting it differently, so spelling out this safeguard would add clarity and avoid uncertainty. Surely such clarity on such an important matter is worth a couple of lines of additional length in a 250-page Bill. If the Government are going to argue that our Amendment 131 adds something objectionable, let them explain what is objectionable about consent protections applying to data processing for these purposes. I beg to move.

[Lord Clement-Jones (LD)]

My Lords, I support Amendments 70 to 72, which I signed, in the name of the noble Lord, Lord Stevenson of Balmacara. I absolutely share his view about the impact of Clause 68 on the definition of consent and the potential and actual mistrust among the public about sharing of their data, particularly in the health service. It is highly significant that 3.3 million people have opted out of sharing their patient data.

I also very much share the noble Lord’s views about the need for public interest. In a sense, this takes us back to the discussion that we had on previous groups about whether we should add that in a broader sense so not purely for health data or whatever but for scientific research more broadly, as he specifies. I very much support what he had to say.

Broadly speaking, the common factor between my clause stand part and what he said is health data. Data subjects cannot make use of their data rights if they do not even know that their data is being processed. Clause 77 allows a controller reusing data under the auspices of scientific research to not notify a data subject in accordance with Article 13 and 14 rights if doing so

“is impossible or would involve a disproportionate effort”.

We on these Benches believe that Clause 77 should be removed from the Bill. The safeguards are easily circumvented. The newly articulated compatibility test in new Article 8A inserted by Clause 71 that specifies how related the new and existing purposes for data use need to be to permit reuse is essentially automatically passed if it is conducted

“for the purposes of scientific research or historical research”.

This makes it even more necessary for the definition of scientific research to be tightened to prevent abuse.

Currently, data controllers must provide individuals with information about the collection and use of their personal data. These transparency obligations generally do not require the controller to contact each data subject. Such obligations can usually be satisfied by providing privacy information using different techniques that can reach large numbers of individuals, such as relevant websites, social media, local newspapers and so on.

Data (Use and Access) Bill [HL]

Debate between Lord Clement-Jones and Lord Stevenson of Balmacara

Committee stage
Tuesday 3rd December 2024 Grand Committee

[Lord Clement-Jones (LD)]

My Lords, of course I welcome the fact that the Bill will enable people to register a death in person and online, which was a key recommendation from the UK Commission on Bereavement. I have been asked to table this amendment by Marie Curie; it is designed to achieve improvements to UK bereavement support services, highlighting the significant administrative burden faced by bereaved individuals.

Marie Curie points to the need for a review of the existing Tell Us Once service and the creation of a universal priority service register to streamline death-related notifications across government and private sectors. It argued that the Bill presents an opportunity to address these issues through improved data-sharing and online death registration. Significant statistics illustrate the scale of the problem, showing a large percentage of bereaved people struggling with numerous administrative tasks. It urges the Government, as I do, to commit to implementing those changes to reduce the burden on bereaved families.

Bereaved people face many practical and administrative responsibilities and tasks after a death, which are often both complex and time sensitive. This Bill presents an opportunity to improve the way in which information is shared between different public and private service providers, reducing the burden of death administration.

When someone dies, the Tell Us Once service informs the various parts of national and local government that need to know. That means the local council stops charging council tax, the DVLA cancels the driving licence, the Passport Office cancels the passport, et cetera. Unfortunately, Tell Us Once is currently not working across all Government departments and does not apply to Northern Ireland. No updated equality impact assessment has ever been undertaken. While there are death notification services in the private sector, they are severely limited by not being a public service programme—and, as a result, there are user costs associated, adding to bereaved people’s financial burden and penalising the most struggling families. There is low public awareness and take-up among all these services, as well as variable and inconsistent provision by the different companies. The fact that there is not one service for all public and private sector notifications means that dealing with the deceased’s affairs is still a long and painful process.

The Bill should be amended to require Ministers to carry out a review into the current operation and effectiveness of the Tell Us Once service, to identify any gaps in its operation and provisions and make recommendations as to how the scope of the service could be expanded. Priority service registers are voluntary schemes which utility companies create to ensure that extra help is available to certain vulnerable customers. The previous Government recognised that the current PSRs are disjointed, resource intensive and duplicative for companies, carrying risks of inconsistencies and can be “burdensome for customers”.

That Government concluded that there is “significant opportunity to improve the efficiencies and delivery of these services”. The Bill is an opportunity for this Government to confirm their commitment to implementing a universal priority services register and delivering any legislative measures required to facilitate it. A universal PSR service must include the interests of bereaved people within its scope, and charitable voluntary organisations such as Marie Curie, which works to support bereaved people, should be consulted in its development.

I have some questions to the Minister. First, what measures does this Bill introduce that will reduce the administrative burden on bereaved people after the death of a loved one? Secondly, the Tell Us Once service was implemented in 2010 and the original equality impact assessment envisaged that its operation should be kept under review to reflect the changing nature of how people engage with public services, but no review has ever happened. Will the Minister therefore commit the Government to undertake a review of Tell Us Once? Thirdly, the previous Government’s Smarter Regulation White Paper committed to taking forward a plan to create a “shared once” support register, which would bring together priority service registers. Will the Minister commit this Government to taking that work forward? I beg to move.

[Lord Stevenson of Balmacara (Lab)]

My Lords, it occurred to me when the noble Lord was speaking that we had lost a valuable member of our Committee. This could not be the noble Lord, Lord Clement-Jones, who was speaking to us just then. It must have been some form of miasma or technical imposition. Maybe his identity has been stolen and not been replaced. Normally, the noble Lord would have arrived with a short but punchy speech that set out in full how the new scheme was to be run, by whom, at what price, what its extent would be and the changes that would result. The Liberal future it may have been, but it was always delightful to listen to. I am sad that all the noble Lord has asked for here is a modest request, which I am sure the noble Baroness will want to jump to and accept, to carry out a review—as if we did not have enough of those.

Seriously, I once used the service that we have been talking about when my father-in-law died, and I found it amazing. It was also one that I stumbled on and did not know about before it happened. Deaths did not happen often enough in my family to make me aware of it. But, like the noble Lord, Lord Clement-Jones, I felt that it should have done much more than what it did, although it was valuable for what it did. It also occurred to me, as life moved on and we produced children, that there would be a good service when introducing a new person—a service to tell you once about that, because the number of tough issues one has to deal with when children are born is also extraordinary and can be annoying, if you miss out on one—particularly with the schooling issues, which are more common these days than they were when my children were being born.

I endorse what was said, and regret that the amendment perhaps did not go further, but I hope that the Minister when she responds will have good news for us.