Viscount Camrose (Con)

Many thanks to all noble Lords who have proposed and supported these amendments. I will speak to just a few of them. Amendment 70 looks to mitigate the lowering of the consent threshold for scientific research. As I have set out on previous groups, I too have concerns about that consent threshold. However, for me the issue is more with the definition of scientific research than with the consent threshold, so I am not yet confident that the amendment is the right way to achieve those desirable aims. Amendment 71 would require that no NHS personal data can be made available for scientific research without the explicit consent of the patient. I thank the noble Lords, Lord Stevenson of Balmacara and Lord Clement-Jones, for raising this because it is such an important matter. While we will discuss this under other levels, as the noble Baroness, Lady Kidron, points out, it is such an important thing and we need to get it right. I regret to advise my noble friend Lord Holmes that I was going to start my next sentence with the words “Our NHS data”, but I will not. The data previously referred to is a very significant and globally unique national asset, comprising many decades of population-wide, cradle-to-grave medical data. No equivalent at anything like the same scale or richness exists anywhere, which makes it incredibly valuable. I thank my noble friend Lord Kamall for stressing this point with, as ever, the help of Jimi Hendrix. However, that data is valuable only to the extent that it can be safely exploited for research and development purposes. The data can collectively help us develop new medicines or improve the administration and productivity of the NHS, but we need to allow it to do so properly. I am concerned that this amendment, if enacted, would create too high an operational and administrative barrier to the safe exploitation of this data. I have no interest in compromising on the safety, but we have to find a more efficient and effective way of doing it. Amendments 79, 81 and 131 all look to clarify that the definition of consent to be used is in line with the definition in Article 4.11 of the UK GDPR: “‘consent’ of the data subject means any freely given, specific, informed and unambiguous indication of the data subject’s wishes by which he or she, by a statement or by a clear affirmative action, signifies agreement to the processing of personal data relating to him or her”. This amendment would continue the use of a definition that is well understood. However, paragraph 3(a) of new Article 8A appears sufficient, in that the purpose for which a data subject consents is “specified, explicit and legitimate”. Finally, with respect to Clause 77 stand part, I take the point and believe that we will be spending a lot of time on these matters going forward. But, on balance and for the time being, I feel that this clause needs to remain, as there must be clear rules on what information should be provided to data subjects. We should leave it in for now, although we will no doubt be looking to polish it considerably.