Contribution
I start by thanking all noble Lords who spoke for their comments and fascinating contributions. We on these Benches share the concern of many noble Lords about the Bill allowing the use of data for research purposes, especially scientific research purposes.
Amendment 59 has, to my mind, the entirely right and important intention of preventing misuse of the scientific research exemption for data reuse by ensuring that the only purpose for which the reuse is permissible is scientific research. Clearly, there is merit in this idea, and I look forward to hearing the Minister give it due consideration.
However, there are two problems with the concept and definition of scientific research in the Bill overall, and, again, I very much look forward to hearing the Government’s view. First, I echo the important points raised by my noble friend Lord Markham. Almost nothing in research or, frankly, life more broadly, is done with only one intention. Even the most high-minded, curiosity-driven researcher will have at the back of their mind the possibility of commercialisation. Alongside protecting ourselves from the cynical misuse of science as a cover story for commercial pursuit, we have to be equally wary of creating law that pushes for the complete absence of the profit motive in research, because to the extent that we succeed in doing that, we will see less research. Secondly—the noble Viscount, Lord Colville, and the noble Lord, Lord Clement-Jones, made this point very powerfully—I am concerned that the broad definition of scientific research in the Bill might muddy the waters further. I worry that, if the terminology itself is not tightened, restricting the exemption might serve little purpose.
On Amendment 62, to which I have put my name, the same arguments very much apply. I accept that it is very challenging to find a form of words that both encourages research and innovation and does not do so at the expense of data protection. Again, I look forward to hearing the Government’s view. I am also pleased to have signed Amendment 63, which seeks to ensure that personal data can be reused only if doing so is in the public interest. Having listened carefully to some of the arguments, I feel that the public interest test may be more fertile ground than a kind of research motivation purity test to achieve that very difficult balance.
On Amendment 64, I share the curiosity to hear how the Minister defines research and statistical processes —again, not easy but I look forward to her response.
Amendment 65 aims to ensure that research seeking to use the scientific research exemption to obtaining consent meets the minimum levels of scientific rigour. The aim of the amendment is, needless to say, excellent. We should seek to avoid creating opportunities which would allow companies—especially but not uniquely AI labs—to cloak their commercial research as scientific, thus reducing the hoops they must jump through to reuse data in their research without explicit consent. However, Amendment 66, tabled in my name, which inserts the words:
“Research considered scientific research that is carried out as a commercial activity must be subject to the approval of an independent ethics committee”,
may be a more adaptive solution.
Many of these amendments show that we are all quite aligned in what we want but that it is really challenging to codify that in writing. Therefore, the use of an ethics committee to conduct these judgments may be the more agile, adaptive solution.
I confess that I am not sure I have fully understood the mechanism behind Amendments 68 and 69, but I of course look forward to the Minister’s response. I understand that they would essentially mean consent by failing to opt out. If so, I am not sure I could get behind that.
Amendment 130 would prevent the processing of personal data for research, archiving and statistical purposes if it permits the identification of a living individual. This is a sensible precaution. It would prevent the sharing of unnecessary or irrelevant information and protect people’s privacy in the event of a data breach.
Amendment 132 appears to uphold existing patient consent for the use of their data for research, archiving and statistical purposes. I just wonder whether this is necessary. Is that not already the case?
Finally, I turn to the Clause 85 stand part notice. I listened carefully to the noble Lord, Lord Clement-Jones, but I am not, I am afraid, at a point where I can support this. There need to be safeguards on the use of data for this purpose; I feel that Clause 85 is our way of having them.