Data Protection Bill [HL] — House of Lords, 2017-11-06
Topic: Health
Lilian Pauline Neville-Jones (Conservative, Centre-right): My Lords, I will speak to Amendment 45A in my name. I am advised my Amendment 64 is not in the right place, so I direct the Committee’s attention to Amendment 45A Last Monday there was considerable focus in our discussions on the vital need to ensure that legitimate research—especially medical research in the public interest based on the personal data of patients—was not impeded by the terms of this legislation by requiring re-consents that might well be unobtainable. The noble Lord, Lord Patel, spelled out the arguments with great cogency and I do not need to repeat them My amendment seeks to ensure that another category of medical activity is not prevented from continuing to give help. I refer to patient support groups. At Second Reading I spoke about Unique, a not-for-profit charity that enables research into, and offers support to, sufferers of rare chromosome disorders and their families. These disorders can and often do result in severe and even profound lifelong disability for which there is no cure Since I spoke, many other patient support organisations have been in touch with the same concerns. They support my amendment. They include Genetic Alliance, which comprises 190 organisations giving support to individuals with rare or incurable conditions, such as the Down’s Syndrome Association; the MPS Society, which supports individuals suffering from mucopolysaccharide disease; Alström Syndrome UK; Prader-Willi Syndrome Association; the MND Association for motor neurone disease; Action Duchenne, which supports those suffering from muscular dystrophy; Save Babies Through Screening Foundation, which focuses on infants with Krabbe disease; the Lily Foundation, which supports those with mitochondrial disease; the PCD Family Support Group, for primary ciliary dyskinesia; UKPIPS, Primary Immune-deficiency Patient Support; SMA Support for spinal muscular atrophy; Vasculitis UK; and Annabelle’s Challenge All these groups support the amendment I tabled. I could go on; there are others. I have listed them because I do not want it thought that there is in my amendment any suggestion of special pleading for a very small number of organisations. On the contrary, patient support groups are numerous and do unsung but irreplaceable work among individuals and families for whom life can be very hard What is the problem with the Bill? Schedule 1 lists a number of circumstances in which the special category of sensitive personal data can be processed without explicit consent for reasons of public interest. But patient support groups do not fall into the categories of organisations that can avail them themselves of this exemption, nor do the purposes for which they collect personal data qualify. This means that the Bill will oblige patient support groups which collect health information from their members either to re-contact everyone from their database to get renewed explicit consent, or to destroy or anonymise any data not re-consented On the face of it, this may seem perfectly reasonable, but it takes no account of the real-life situation of the individuals and their families which the patient support groups help. I explained at Second Reading how in reality carers, who may be the other side of the world, may not respond to communications but then, possibly years later, communicate to ask for help or get in touch to help each other. It is certainly wasteful and gratuitously harmful to require such data to be destroyed when it is the very basis on which these groups can offer relevant support. In the case of Unique, experience suggests that up to 50% of existing data would need to be destroyed, having been accumulated over 30 years, and thus lost for current and future research and sufferers. I am sure this cannot be the intended outcome of the Bill Anonymisation, which in some circumstances might be an acceptable answer, does not provide a solution in the case of support groups. Matching disease types enables support groups to give informed prognoses to the families of sufferers and to their clinicians, who individually may not have met such a rare condition before. They help with practical advice and put sufferers and their families in touch with each other, thus improving their prospects and relieving distress and loneliness. But to do this, they need access to names and addresses and special-category data of their members, because anonymous data are of absolutely no use in this context Medical research would also be the loser as the Bill stands. To take one example, the MND Association, the motor neurone support group, has more than 3,000 blood samples in its collection, cell lines and accompanying clinical information. This database has been and is used in a variety of research projects to look at potential causative genes. Samples will also be used to screen potential drugs. To all this, the personal data of the individuals concerned is essential and it is not guaranteed that they will always be capable of being re-contacted. In this context, perhaps I may quote from a statement by Public Health England in support of the work of patient support groups: "We are clear that patient registries, particularly for individuals with less common conditions, are one of the most valuable sources for the care, research and support of patients and their families. In many cases they are the only source of information on some disorders. Some collections stretch back many years. This historical record is essential for longitudinal studies and long term follow up … These searches can only be performed on well curated, identifiable data as people change their names and locations" Public Health England goes on to say that the question is about the adequacy of the consent obtained in the first place and whether it meets the enhanced rights of data subjects under the GDPR. Absolutely—there is no argument that the consent at the outset needs to be of a good standard so that subsequent use of personal data can be validly based on it My amendment would confine the special provision that I am proposing to members of organisations for specific purposes which I would hope we could all agree lie in the public interest. It would not open the floodgates to a collection of streams of unconsented personal data for undefined purposes. I therefore hope that the Government can agree to my amendment.