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.