Lord Clement-Jones (LD)

My Lords, I support Amendments 70 to 72, which I signed, in the name of the noble Lord, Lord Stevenson of Balmacara. I absolutely share his view about the impact of Clause 68 on the definition of consent and the potential and actual mistrust among the public about sharing of their data, particularly in the health service. It is highly significant that 3.3 million people have opted out of sharing their patient data. I also very much share the noble Lord’s views about the need for public interest. In a sense, this takes us back to the discussion that we had on previous groups about whether we should add that in a broader sense so not purely for health data or whatever but for scientific research more broadly, as he specifies. I very much support what he had to say. Broadly speaking, the common factor between my clause stand part and what he said is health data. Data subjects cannot make use of their data rights if they do not even know that their data is being processed. Clause 77 allows a controller reusing data under the auspices of scientific research to not notify a data subject in accordance with Article 13 and 14 rights if doing so “is impossible or would involve a disproportionate effort”. We on these Benches believe that Clause 77 should be removed from the Bill. The safeguards are easily circumvented. The newly articulated compatibility test in new Article 8A inserted by Clause 71 that specifies how related the new and existing purposes for data use need to be to permit reuse is essentially automatically passed if it is conducted “for the purposes of scientific research or historical research”. This makes it even more necessary for the definition of scientific research to be tightened to prevent abuse. Currently, data controllers must provide individuals with information about the collection and use of their personal data. These transparency obligations generally do not require the controller to contact each data subject. Such obligations can usually be satisfied by providing privacy information using different techniques that can reach large numbers of individuals, such as relevant websites, social media, local newspapers and so on.