Data (Use and Access) Bill [HL]

Debate between Lord Tarassenko and Lord Winston

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.