Data Protection and Digital Information Bill

Baroness Jones of Whitchurch Excerpts

Committee stage
Wednesday 20th March 2024 Grand Committee

[Baroness Jones of Whitchurch (Lab)]

My Lords, I am grateful to all noble Lords who have spoken on this group. Amendment 6 to Clause 2, tabled by the noble Lord, Lord Clement-Jones, rightly tests the boundaries on the use of personal data for scientific research and, as he says, begins to ask, “What is the real purpose of this clause? Is it the clarification of existing good practice or is it something new? Do we fully understand what that new proposition is?”

As he said, there is particular public concern about the use of personal health data where it seems that some private companies are stretching the interpretation of “the public good”, for which authorisation for the use of this data was initially freely given, to something much wider. Although the clause seeks to provide some reassurance on this, we question whether it goes far enough and whether there are sufficient protections against the misuse of personal health data in the way the clause is worded.

This raises the question of whether it is only public health research that needs to be in the public interest, which is the way the clause is worded at the moment, because it could equally apply to research using personal data from other public services, such as measuring educational outcomes or accessing social housing. There is a range of uses for personal data. In an earlier debate, we heard about the plethora of data already held on people, much of which individuals do not understand or know about and which could be used for research or to make judgments about them. So we need to be sensitive about the way this might be used. It would be helpful to hear from the Minister why public health research has been singled out for special attention when, arguably, it should be a wider right across the board.

Noble Lords have asked questions about the wider concerns around Clause 2, which could enable private companies to use personal data to develop new products for commercial benefit without needing to inform the data subjects. As noble Lords have said, this is not what people would normally expect to be described as “scientific research”. The noble Baroness, Lady Kidron, was quite right that it has the potential to be unethical, so we need some standards and some clear understanding of what we mean by “scientific research”.

That is particularly important for Amendments 7 and 132 to 134 in the name of the noble Lord, Lord Clement-Jones, which underline the need for data subjects to be empowered and given the opportunity to object to their data being used for a new purpose. Arguably, without these extra guarantees—particularly because there is a lack of trust about how a lot of this information is being used—data subjects will be increasingly reluctant to hand over personal data on a voluntary basis in the first place. It may well be that this is an area where the Information Commissioner needs to provide additional advice and guidance to ensure that we can reap the benefits of good-quality scientific research that is in the public interest and in which the citizens involved can have absolute trust. Noble Lords around the Room have stressed that point.

Finally, we have added our names to the amendments tabled by the noble Baroness, Lady Kidron, on the use of children’s data for scientific research. As she rightly points out, the 2018 Act gave children a higher standard of protection on the uses for which their data is collected and processed. It is vital that this Bill, for all its intents to simplify and water down preceding rights, does not accidentally put at risk the higher protection agreed for children. In the earlier debate, the Minister said that he believed it will not do so. I am not sure that “believe” is a strong enough word here; we need guarantees that go beyond that. I think that this is an issue we will come back to again and again in terms of what is in the Bill and what guarantees exist for that protection.

In particular, there is a concern that relaxing the legal basis on which personal data can be processed for scientific research, including privately funded research carried out by commercial entities, could open the door for children’s data to be exploited for commercial purposes. We will consider the use of children’s data collected in schools in our debate on a separate group but we clearly need to ensure that the handling of pupils’ data by the Department for Education and the use of educational apps by private companies do not lead to a generation of exploited children who are vulnerable to direct marketing and manipulative messaging. The noble Baroness’s amendments are really important in this regard.

I also think that the noble Baroness’s Amendment 145 is a useful initiative to establish a code of practice on children’s data and scientific research. It would give us an opportunity to balance the best advantages of children’s research, which is clearly in the public and personal interest, with the maintenance of the highest level of protection from exploitation.

I hope that the Minister can see the sense in these amendments. In particular, I hope that he will take forward the noble Baroness’s proposals and agree to work with us on the code of practice principles and to put something like that in the Bill. I look forward to his response.

[Viscount Camrose (Con)]

I thank the noble Lord, Lord Clement-Jones, and the noble Baroness, Lady Jones, for this series of amendments.

I will first address Amendment 6, which seeks to amend Clause 2. As the noble Lord said, the definitions created by Clause 2, including “scientific research purposes”, are based on the current wording in recital 159 to the UK GDPR. We are changing not the scope of these definitions but their legal status. This amendment would require individual researchers to assess whether their research should be considered to be in the public interest, which could create uncertainty in the sector and discourage research. This would be more restrictive than the current position and would undermine the Government’s objectives to facilitate scientific research and empower researchers.

We have maintained a flexible scope as to what is covered by “scientific research” while ensuring that the definition is still sufficiently narrow in that it can cover only what would reasonably be seen as scientific research. This is because the legislation needs to be able to adapt to the emergence of new areas of innovative research. Therefore, the Government feel that it is more appropriate for the regulator to add more nuance and context to the definition. This includes the types of processing that are considered—

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There is a lot to like here. The noble Baroness has done the Government’s job for them; the drafting seems terrific to me. I am sure that the Minister will talk about the amendments being technically flawed and so on and so forth—that is bound to happen—but I think that they are pretty good and very much hope that he will give them a fair wind. I know that he will be personally enthusiastic about this.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I am also pleased to support these amendments in the name of the noble Baroness, Lady Kidron, to which I have added my name. I am hugely enthusiastic about them, too, and think that this has been a lightbulb moment from the noble Baroness. I very much thank her for doing all of this background work because she has identified the current weakness in the data protection landscape: it is currently predicated on an arrangement between an individual and the organisation that holds their data.

That is an inherently unbalanced power construct. As the noble Baroness said, as tech companies become larger and more powerful, it is not surprising that many individuals feel overwhelmed by the task of questioning or challenging those that are processing their personal information. It assumes a degree of knowledge about their rights and a degree of digital literacy, which we know many people do not possess.

In the very good debate that we had on digital exclusion a few weeks ago, it was highlighted that around 2.4 million people are unable to complete a single basic task to get online, such as opening an internet browser, and that more than 5 million employed adults cannot complete essential digital work tasks. These individuals cannot be expected to access their digital data on their own; they need the safety of a larger group to do so. We need to protect the interests of an entire group that would otherwise be locked out of the system.

The noble Baroness referred to the example of Uber drivers who were helped by their trade union to access their data, sharing patterns of exploitation and subsequently strengthening their employment package, but this does not have to be about just union membership; it could be about the interests of a group of public sector service users who want to make sure that they are not being discriminated against, a community group that wants its bid for a local grant to be treated fairly, and so on. We can all imagine examples of where this would work in a group’s interest. As the noble Baroness said, these proposals would allow any group of people to assign their rights—rights that are more powerful together than apart.

There could be other benefits; if data controllers are concerned about the number of individual requests that they are receiving for data information—and a lot of this Bill is supposed to address that extra work—group requests, on behalf of a data community, could provide economies of scale and make the whole system more efficient.

Like the noble Baroness, I can see great advantages from this proposal; it could lay the foundation for other forms of data innovation and help to build trust with many citizens who currently see digitalisation as something to fear—this could allay those fears. Like the noble Lord, Lord Clement-Jones, I hope the Minister can provide some reassurance that the Government welcome this proposal, take it seriously and will be prepared to work with the noble Baroness and others to make it a reality, because there is the essence of a very good initiative here.

[Viscount Camrose (Con)]

I thank the noble Baroness, Lady Kidron, for raising this interesting and compelling set of ideas. I turn first to Amendments 10 and 35 relating to data communities. The Government recognise that individuals need to have the appropriate tools and mechanisms to easily exercise their rights under the data protection legislation. It is worth pointing out that current legislation does not prevent data subjects authorising third parties to exercise certain rights. Article 80 of the UK GDPR also explicitly gives data subjects the right to appoint not-for-profit bodies to exercise certain rights, including their right to bring a complaint to the ICO, to appeal against a decision of the ICO or to bring legal proceedings against a controller or processor and the right to receive compensation.

The concept of data communities exercising certain data subject rights is closely linked with the wider concept of data intermediaries. The Government recognise the existing and potential benefits of data intermediaries and are committed to supporting them. However, given that data intermediaries are new, we need to be careful not to distort the sector at such an early stage of development. As in many areas of the economy, officials are in regular contact with businesses, and the data intermediary sector is no different. One such engagement is the DBT’s Smart Data Council, which includes a number of intermediary businesses that advise the Government on the direction of smart data policy. The Government would welcome further and continued engagement with intermediary businesses to inform how data policy is developed.