Data (Use and Access) Bill [HL]

Lord Winston Excerpts

Consideration of Commons amendments and / or reasons
Monday 12th May 2025 Lords Chamber

[Lord Winston (Lab)]

My Lords, I sat through the Committee stage and did not speak, because I was so clear that the amendment tabled by the noble Viscount, Lord Colville, was really inappropriate. Indeed, it was the speech by my noble friend Lord Vallance that made me feel that speaking was unnecessary. I regret that, because I should have pointed out something very important.

First, to come back to what the noble Baroness has just said, the definitions in the Bill are flawed to start with. Devising new applications of available knowledge is not the work of scientists; it is essentially the work of technologists—and there is a big difference between technology and science. Technology has all sorts of downsides that we do not expect. Science is simply knowledge and, as such, it does not have an ethical dimension. That has been stated by many distinguished philosophers in the past.

I suggest to noble Lords that every invention and innovation that we make has a downside that we do not expect. I would challenge the noble Viscount, Lord Colville. I have sat on a scientific committee with him and we have enjoyed each other’s company, but I would argue that there is not a single case where he could argue that there has not been an unexpected downside—as there is with every scientific invention. That, essentially, is why this is a flawed problem.

There are three problems facing humanity and the world at the moment. One, clearly, is nuclear war; one, clearly, is climate change; and perhaps the most important one is the risk of antibiotic resistance. It turns out that all these risks were completely unseen when those technologies were started. Marie Curie, working on pitchblende and radium, had no idea that the X-rays she was producing would be dangerous to her and would, unfortunately, result in her death as a result of cancer. She certainly did not recognise that there might be such a thing as nuclear explosions.

When it comes to, for example, climate change, it is obvious that we would not want to avoid having had the Industrial Revolution and all the things we got from it, just as we would not want to avoid having X-rays. But we must understand that the control has to come later.

Lastly, the most important thing for me is the possibility that infection is one of the greatest problems that humanity faces on earth at the moment. The invention of antibiotics has actually made that worse, because we now have a rising number of infections that are due to resistance. Therefore, I beg the noble Viscount not to press his amendment. I believe that it is absolutely well-meaning, and I understand what he is trying to say, but I hope that the Opposition, when they listen to this, will consider at least abstaining from voting on it, because the risk is that it might bring the House of Lords into disrepute as it stands.

[Lord Tarassenko (CB)]

My Lords, I am authorised to speak on Motion 43A, as someone with regular day-to-day experience of scientific research. Since I started my PhD in 1981, I have had the privilege of spending more than half my working life doing scientific research in the UK—the last 20 years working with very sensitive patient data. Most of that research has been carried out in an academic setting, but some of it has been in collaboration with medtech, AI and pharmaceutical companies.

This research has required me to become familiar with many three-letter and four-letter acronyms. Noble Lords will know about DBS, but they might not know about RSO, TRO, HRA, LREC, MREC, CAG, and IRAS, to name just a few. I have spent hundreds of hours working with clinical colleagues to fill in integrated research application system—IRAS—forms. IRAS is used to apply for Health Research Authority—HRA—approval for research projects involving the NHS, social care or the criminal justice system. I have appeared before not only medical research ethics committees, or MRECs, which test whether a research protocol is scientifically valid and ethical, but local research ethics committees, or LRECs, which consider the suitability of individual researchers and local issues.

I was involved in a research project which reused data acquired from patients on a Covid isolation ward during the first two waves of the pandemic. That research project sought to understand how nurses interpreted continuous data from the clinical-grade wearables we used to monitor these high-risk patients during Covid. It took our research team more than 18 months to obtain the relevant permissions to reuse the data for our proposed analysis. Our application was reviewed by the Confidentiality Advisory Group—CAG—which provides independent expert advice on the use of confidential patient information without consent for research and non-research purposes. CAG already considers whether accessing the confidential data is justified by the public interest. Its advice is then used by the HRA and the Secretary of State for Health and Social Care to decide whether to grant access to the confidential data.

The existing provisions in this country to allow access to data for research purposes are stringent, and it is entirely right that they should be. The UK is respected the world over for the checks and balances of its research governance. The relevant safeguards already exist in the current legislation. Adding a further public interest test will only increase the amount of bureaucracy that will inevitably be introduced by the research services offices, or RSOs, and the translational research offices, or TROs, of our universities, which are very good at doing this.

The extra burden will fall on the researchers themselves, and some researchers may decide to concentrate their available time and energy elsewhere. This amendment, I am afraid, will have the unintended consequence of having a negative impact on research in this country, so I cannot support it.

[Lord Clement-Jones (LD)]

My Lords, an onlooker might be forgiven for not perceiving a common theme in this group of amendments, but I thank the Minister for his introduction and the noble Viscounts for introducing their amendments so clearly.

I acknowledge that Motion 32A and Amendments 32B and 32C and Motion 52A and Amendments 52B and 52C from the noble Viscount, Lord Camrose, are considerably less prescriptive than the Spencer amendment in the House of Commons to introduce new Clause 21, which seemed to require public authorities to comb through every record to rectify data, went significantly further than the findings of the Supreme Court judgment, and potentially failed to account for the privacy afforded to GRC holders under the Gender Recognition Act. However, the Liberal Democrats will abstain from votes on the noble Viscount’s amendments for several key reasons.

Our primary reason is the need to allow time for the EHRC’s guidance to be finalised. I thought the Minister made his case there. The EHRC is currently updating its code of practice, as we have heard, to reflect the implications of the Supreme Court judgment on the meaning of sex in the Equality Act, with the aim of providing it to the Government by the end of June. This guidance, as I understand it, is intended specifically to support service providers, public bodies and others in understanding their duties under the Equality Act and putting them into practice in the light of the judgment. The EHRC is undertaking a public consultation to understand how the practical implications can best be reflected. These amendments, in our view, are an attempt to jump the gun on, second-guess or at the least pre-empt the EHRC’s code of practice.

On these Benches, we believe that any necessary changes or clarifications regarding data standards should be informed by the official guidance and implemented consistently in a coherent and workable manner. We should allow time for the EHRC’s guidance to be finalised, ensuring that any necessary changes or clarifications regarding data standards are informed by its advice and implemented consistently across public authorities in a coherent and workable manner. We have concerns about workability and clarity. Although the amendments proposed by the noble Viscount, Lord Camrose, are less prescriptive than previous similar proposals in the Commons tabled by Dr Spencer, we have concerns about their practical implementation. Questions arise about how public authorities would reliably ascertain biological sex if someone has a gender recognition certificate and has updated their birth certificate. I have long supported same-sex wards in the NHS, but I do not believe that these amendments are helpful in pursuing clarity following the Supreme Court judgment. We heard what the Minister had to say about passports.

I welcome the clarity provided by the Supreme Court judgment, but there are clearly implications, both practical and legal, to be worked out, such as those mentioned by the noble Viscount, Lord Hailsham. I thought he put his finger on many of those issues. I trust that the EHRC will deliver the right result. I agree that data needs to be accurate, and I welcome the Sullivan report, as did my noble friend. In summary, we will be abstaining. We believe that the EHRC process needs to conclude and provide comprehensive guidance, while also reflecting concerns about the workability and appropriateness of specific legislative interventions on data standards at this time.

I move on to Amendment 43B, tabled by the noble Viscount, Lord Colville. This amendment may not reinstate the precise wording

“conducted in the public interest”

that we previously inserted in this House, but it would introduce safeguards that seek to address the same fundamental concerns articulated during our debate on Report. It does two important things.

First, it provides a definition of “scientific research”, clarifying it as

“creative and systematic work undertaken in order to increase the stock of knowledge”.

This directly addresses the concerns raised on Report that the line between product development and scientific research is often blurred, with developers sometimes positing efforts to increase model capabilities or study risks as scientific research. Having a clear definition helps to distinguish genuine research from purely commercial activity cloaked as such.

Secondly, and critically, Amendment 43B would require:

“To meet the reasonableness test”


already present in the Bill,

“the activity being described as scientific research must be conducted according to appropriate ethical, legal and professional frameworks, obligations and standards”.

This requirement seeks to embed within the reasonableness test the principles that underpinned our arguments for the public interest requirement on Report and is the same as the amendment put forward by the chair of the Science, Innovation and Technology Select Committee, Chi Onwurah MP, which ties the definition to the definition in the OECD’s Frascati Manual: Guidelines for Collecting and Reporting Data on Research and Experimental Development:

“creative and systematic work undertaken in order to increase the stock of knowledge—including knowledge of humankind, culture and society—and to devise new applications of available knowledge”.

The Frascati framework is used worldwide by Governments, universities and research institutions to report R&D statistics, inform science policy and underpin R&D tax credit regimes, and it serves as a common language and reference point for international comparisons and policy decisions related to scientific research and innovation. These frameworks, obligations and standards are important because they serve the very purposes we previously identified for the public interest test: ensuring societal benefit, building public trust, preventing misuse for commercial ends, addressing harmful applications, and alignment with standards.

Amendment 43B in the name of the noble Viscount, Lord Colville, is a thoughtful and necessary counter-proposal. It is Parliament’s opportunity to insist that the principles of public benefit, trust and responsible conduct, rooted in established frameworks, must remain central to the definition of scientific research that benefits from data re-use exceptions.

I heard what the noble Lord, Lord Winston, had to say in his very powerful speech, but I cannot see how the amendment from the noble Viscount, Lord Colville, cuts across all the things that he wants to see in the outcomes of research.

[Lord Winston (Lab)]

As the noble Lord has mentioned my name, I simply ask him this question: does he recall the situation only some 45 years ago when there was massive public outcry about in vitro fertilisation, when there were overwhelming votes against in vitro fertilisation in both Houses of Parliament on two occasions, and when, finally, a Private Member’s Bill was brought, which would have abolished IVF in this country? Had that happened, of course, an amendment such as this would have prevented the research happening in England and would have made a colossal difference not only to our knowledge of embryo growth, but our knowledge of development, ageing, the development of cancer and a whole range of things that we never expected from human embryology. I beg the noble Lord to consider that.