My Lords, I hope that the Minister will comment on a fact mentioned by the noble Earl, Lord Erroll: namely, that on its imminent coming into force the European data protection regulation will indeed supersede our Data Protection Act, which implements the current European directive. I am sure that the debate in Brussels has been conducted with the highest aims for the protection of privacy but I also believe that it is based on considerable illusions. It aims to introduce reliance on specific and explicit consent for each and every reuse of lawfully held data. This is an illusory standard. In the commercial world it works as we can tick and click as giving consent to terms and conditions, but it does not provide an adequate model for the world of medical research. I fear that when this draft regulation comes through, which it is very likely to do, we will not have secured better standards for the protection of patient privacy in research, and nor will we have secured the future of medical research.
This seems to me to be a very poor moment at which to have to make decisions on protecting the privacy of patient data, because the ground rules are about to change. They will of course be compatible with an interpretation of the European Convention, but they will change a great deal. I declare an interest as chair of the ethics, regulation and public involvement committee of the Medical Research Council, and as chair of the Equality and Human Rights Commission.
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