Data Protection Bill [HL] — House of Lords, 2017-12-11
Topic: Health
Thomas Ashton (Conservative, Centre-right): My noble friend Lady Neville-Jones explained in Committee that Unique plays a hugely important role in providing advice and support to sufferers of rare chromosomal disorders and their carers. Some of these charities have large databases dating back many years, so we understand their desire to maintain these when the GDPR comes into force without necessarily obtaining fresh consent to GDPR standards for each data subject included on the database. When families are providing support to their loved ones, some of whom may need round-the-clock care, filling in a new consent form may not be high on their agenda However, they may still value the support and services that patient support groups provide and would be concerned if they were removed from the charities’ databases. If charities such as Unique had to stop processing or delete records because consent could not be obtained, they worry that this would impede the work they do to put patients and their families in touch with others suffering from rare genetic conditions, help clinicians to deliver diagnoses and facilitate research projects. We recognise that this could be particularly damaging when there is barely any knowledge of the condition other than what they may hold on their database Let me be clear: if there is a grey area in the Bill that puts this work at risk, the Government are fully prepared to amend it. Legislating in this area is not straightforward and I am keen that the policy and legal teams in the department are able to continue with the constructive discussions they have been having with Unique and the UK Genetic Alliance to ensure that the legislation adequately covers the specific processing activities they are concerned about, while providing adequate safeguards for data subjects. I assure noble Lords that we will use our best endeavours to work on this legislative solution as quickly as possible. If it is not ready by Third Reading, and I am afraid I cannot promise it will be, the Government will endeavour to introduce any necessary provisions at the next possible amending stage of the Bill. I will of course ensure that my noble friend gets the credit she deserves for her persistent efforts on this subject when that time comes Government Amendments 72 to 77 are the products of detailed discussion with the noble Lord, Lord Patel, the noble Baroness, Lady Manningham-Buller, and representatives of the Wellcome Trust. I thank them very much for those constructive and helpful discussions. In Committee we discussed the operation of the safeguards in Clause 18 and the potentially damaging impact they would have on pioneering medical research. As I explained at the time, it was never the Government’s intention to undermine such important work, so it is with great pleasure that I table these amendments today Noble Lords will recall that the greatest concern stemmed from the safeguard in what is currently Clause 18(2)(a). That paragraph was designed to prevent researchers using personal data to make measures and decisions in respect of particular data subjects but, as the noble Lord explained, there are certain types of medical research where this is inevitable. In the context of a clinical trial, for example, a data subject might willingly agree to participate, but in the course of the trial researchers might need to make decisions about whether the treatment should continue or stop, with respect to some or all data subjects. Government Amendment 77 addresses this concern by making it clear that the safeguard is automatically met where processing is necessary for the purposes of approved medical research. Approved medical research is defined in the new clause and includes, for example, research approved by an ethics committee established by the Health Research Authority or relevant NHS body. Importantly, the new clause also contains an order-making power so that the definition of approved research can be kept up to date.