Data Protection Bill [HL]

Debate between Baroness Neville-Jones and Lord Clement-Jones

Report stage (Hansard - continued): House of Lords
Monday 11th December 2017 Lords Chamber

[Baroness Neville-Jones (Con)]

My Lords, I introduced the same amendment in Committee and do not intend to repeat what I said then. I am glad to say that, since I put down that amendment, there has been a very helpful meeting between DCMS officials, the Genetic Alliance UK and Unique. I very much hope that that meeting will form the basis of a solution on which we can build for Third Reading. I thank my noble friend the Minister for his personal contribution to the progress that we have made.

My understanding is that at that meeting it was accepted that an amendment would have to be brought forward to ensure the legality of the work of patient support groups. My understanding also is that the Government would prefer to do this by their own amendment, and I am certainly very happy to accept that. I also hope that it will be possible to agree such an amendment before Third Reading.

My noble friend has said that he is concerned about defining the scope of the amendment. I certainly accept that that is a legitimate issue. The family of patient support groups is quite large, but I accept that it is right to prevent any amendment becoming a loophole for evasion of the Bill’s provisions. I am conscious of that issue. However, the purpose of the amendment is not controversial and I am happy to look to finding words and drafting that will both safeguard the points that we want to make and provide the right scope for the amendment. It would be highly desirable to be able to deal with this matter in our House.

I hope and trust that my noble friend will be able to confirm that he shares my understanding of the point that we have now reached and that he will be able to give me an assurance at least of best endeavours to present a government amendment at Third Reading. I might say that Genetic Alliance and other patient support groups stand ready to help in any way that they can to meet this deadline.

[Lord Clement-Jones]

My Lords, I will speak briefly to support the noble Baroness, Lady Neville-Jones, in her amendment. Clearly, this is of great importance to patient groups. I very much hope that the Minister will carry on the good work and come back at Third Reading with something substantive for the benefit of patient organisations that collect vital health information from their members, so that they will not be required to destroy or anonymise data. Without amendment, the Data Protection Bill has the potential to seriously damage the work of these patient support groups and hinder the work of certain public agencies, too, such as Public Health England and NICE—so I very much support the noble Baroness.