UK Parliament / Open data

Data Protection Bill [HL]

My Lords, first, I thank the noble Lord, Lord Patel, for his insightful remarks and for providing us with evidence of his knowledge of this subject, and of the Bill’s potential implications for pioneering medical research. I am grateful to him for sharing his expertise on these issues. I am also grateful to the noble Baroness, Lady Manningham-Buller, who speaks on behalf of the Wellcome Trust. Other reputable medical research organisations and universities have also expressed concern about this issue. I understand about the issue of consent and whether it is GDPR-compliant.

On the concerns the noble Lord raised in relation to Clause 7, I mentioned at Second Reading, and on a previous group of amendments, that the list of tasks in Clause 7 is deliberately designed to be indicative and non-exhaustive. When I wrote to noble Lords after that debate, I committed to make this clearer in the Explanatory Notes and the Government will honour that commitment.

The noble Lord, Lord Stevenson, mentioned that we might have to have a new approach to this problem. We are happy to think about these issues. At the moment we find that it is difficult to expand Clause 7 to cover every scenario where personal data has been processed in the public interest. Each addition to the list, however justified on its own merits, would cast greater uncertainty on the public interest tasks that continue to be omitted. However, I can reassure universities and research groups carrying out legitimate medical research, that, in the Government’s view, such tasks are in the public interest for these purposes. I will come later to how we take this forward.

9.30 pm

On Amendment 111, once again I thank the noble Lord, Lord Patel, for his helpful suggestions. He explained that the safeguard in Clause 18(2)(a)—on page 10 of the Bill—could impede certain types of medical research, such as clinical trials and interventional research, which sometimes involve decisions being made about data subjects without their explicit consent. Incidentally, the provisions in Clause 18 were copied from the Data Protection Act on the basis of responses to the Government’s call for views in May. These more technical issues have emerged recently, and we certainly will consider them further.

It is absolutely not the Government’s intention to impede pioneering medical research, which can have tangible benefits for society as a whole. The noble Lord’s suggestion of disapplying the safeguards if the research project has been approved by a relevant medical ethics review body is certainly worthy of further consideration. I am happy to work with him and other noble Lords to explore it further in the coming weeks. On that basis, I invite the noble Lord to withdraw his amendments. However, once again, I am grateful to him for raising these important points and I hope we will reach a solution which works for everyone.

About this proceeding contribution

Reference

785 c1261 

Session

2017-19

Chamber / Committee

House of Lords chamber
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