The second day of Committee Stage for the Data Use and Access Bill on 10 December 2024 saw close scrutiny of provisions in the Data (Use and Access) Bill related to the processing of personal data.
This is an incredibly important piece of legislation that aims to harness the power of data for economic growth, as well as supporting digital government and improving lives. Committee Stage offers myself and colleagues the opportunity to go through the draft legislation line by line, asking questions and suggesting changes.
‘Scientific Research’
The debate kicked off with a focus on concerns about what may happen following the broadening out of UK GDPR to add the right to process personal data for the purposes of scientific research defined in the Bill as “any research that can reasonably be described as scientific, whether publicly or privately funded and whether carried out as a commercial or non-commercial activity”.
Whilst hugely supportive of data sharing for research in the public interest , colleagues and I were concerned that this clause might have unintended consequences. The Bill must be read in the context of recent developments in Artificial Intelligence and the practices of AI developers. There are concerns that the definition of scientific research adopted in the Bill is too broad and will permit abuse for commercial interests inconsistent with the policy intention.
Colleagues pointed out that this definition of scientific research would seem to apply equally to both Google Deepmind’s Alphafold project which performs predictions of protein structure as well as behavioural science testing children’s response to persuasive design strategy to extend the stickiness of commercial products. It will always be difficult to distinguish between science and commerce. Clearly anything that is done for science, including the social sciences, is likely to accrue commercial benefits.
The answer perhaps is in a working definition of public interest. Several amendments have been proposed to help improve the Bill and address these fears – my own suggested clarifying that this definition should not include processing for the development or improvement of AI training, or re-using personal data scraped from the internet.
The Minister’s response directly refuted the idea that the Bill was expanding the definition of “scientific research”.
I should make it clear that this Bill is not expanding the meaning of “scientific research”. If anything, it is restricting it, because the reasonableness test that has been added to the legislation—along with clarification of the requirement for research to have a lawful basis—will constrain the misuse of the existing definition. The definition is tighter, and we have attempted to do that in order to make sure that some of the new developments and technologies coming on stream will fall clearly within the constraints we are putting forward in the Bill today.
The Parliamentary Under-Secretary of State, Department for Business and Trade and Department for Science, Innovation and Technology, Baroness Jones of Whitchurch, House of Lords, 10 December 2024.
I spoke in the debate to point out that scientific research has a clear meaning when you add public interest and ethics.
Could a model that has taken vast quantities of others’ data without consent and without remuneration and consent still potentially fit within the definition of “scientific research”?
In many ways, we are debating these points around data in the context of scientific research, but we could go to the very nub or essence of the issue. All that noble Lords are asking, in their many eloquent and excellent ways, is whose data is it, to what purpose is it being put and have those data owners been consented, respected and, where appropriate—particularly when it comes to IP and copyrighted data—remunerated?
Lord Holmes, House of Lords, 10 December 2024
‘NHS Data’
Similar fears about the impact the Bill will have on the definition of consent and potential and actual mistrust among the public about sharing of their data, was extended particularly to the area of health. It is highly significant that 3.3 million people have opted out of sharing their patient data and noteworthy that the Government have made the sharing of health data one of principle arguments for this Bill.
Legislation will improve clinical outcomes, speed up the delivery of care, and reduce duplication in lab tests and medication errors, by making information standards mandatory for all suppliers of IT services to the health and care system, ensuring health and care data is recorded and managed in the same way. This will lay the foundations for patient information to flow safely, securely, and seamlessly.
Data (Use and Access) Bill factsheet: improving public services – GOV.UK
However the British Medical Association is deeply concerned that the Bill will water down the transparency of information to patients. Personal data collected through mass scraping or ingested during AI training would not be subject to normal notification requirements if it involved disproportionate effort. Colleagues argued that any reduction in transparency requirements would be a backward step in promoting confidence in the use of health data, given the very close relationship between transparency and public trust.
I agree.
Probably the most important point for everybody to realise, although it is espoused so often, is that there is no such thing as NHS data. It is a collection of the data of every citizen in this country, and it matters. Public trust matters significantly for all data but for health data in particular, because it goes so close to our identity—our very being.
Yet we know how to do public trust in this country. We know how to engage and have had significant success in public engagement decades ago. What we could do now with human-led technology-supported public engagement could be on such a positive and transformational scale. But, so far, there has been so little on this front. Let us not talk of NHS data; let us always come back to the fundamental principle encapsulated in this group of amendments and across so many of our discussions on the Bill. Does the Minister agree that it is about not NHS data but our data—our decisions—and, through that, if we get it right, our human-led digital futures?
Lord Holmes, House of Lords, 10 December 2024
Catch up
- Watch the Parliament TV recording.
- Read Committee Stage Debates on Hansard
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