Data Protection Bill [HL]

Lord Patel Excerpts

2nd reading (Hansard): House of Lords
Tuesday 10th October 2017 Lords Chamber

[Lord Patel (CB)]

My Lords, many of my comments on the Bill are about data collection, usage and storage, particularly as it applies to research and, in particular, health research. In that respect, I will reference many of the comments on research made by the noble Baroness, Lady Neville-Jones, including health research generally and health research for people with rare conditions and how that data might be collected.

Given the rapid advances of data science and our capacity to collect, process and store vast quantities of data, such as genomic data for individuals, ensuring that data subjects have clear rights regarding how their data is used is vital. The recently published life sciences industrial strategy acknowledges both that fact and the significant potential of the data held within the healthcare system, especially for delivering better care and for the research sector.

The importance of getting the governance of personal data right is increasingly being recognised. The Royal Society and the British Academy recently published a report on data governance, calling for careful stewardship of data to ensure that the power and value of data are harnessed in such a way as to promote better human health and human benefit.

The Government have indicated that they recognise the importance of maintaining data flows across borders post Brexit, and that is positive. For instance, three-quarters of the health-related data flow from the UK is to the EU. As far as research is concerned, the relevant provisions of the Data Protection Bill mirror the GDPR and so should not generate problems for international collaborative research as it stands. However, it is imperative that international research that requires the transfer of personal data can continue without disruption post Brexit, and the example of rare diseases used by the noble Baroness, Lady Neville-Jones, is absolutely appropriate. In such situations, research often has to be co-ordinated and conducted across many countries, as there are few individuals with a particular condition in each country. My noble friend Lord Jay referred to the need for adequacy arrangements, and I think that that applies particularly in this area. Therefore, my question to the Minister is: will the UK, as a third country, seek an adequacy decision from the EU for data transfers in this respect?

I now come to Clause 7, which refers to alternatives to consent. The noble Baroness, Lady Neville-Jones, referred briefly to the problems that arise. For many uses of personal data, explicit consent is absolutely the right legal basis for processing that data, and it is positive that, with the GDPR, data subjects’ rights have been strengthened. Medical research will usually rely on a person providing informed consent for ethical reasons, but it is essential that there are alternatives to consent as a legal basis. That is because GDPR-compliant explicit consent sets a high bar for information provision that it may not always be feasible to meet. In many research resources, such as biobanks—I hope that my noble friend Lady Manningham-Buller will refer to that as the chairman of the Wellcome Trust, which is responsible for initiating the UK Biobank—the participants give consent for their pseudonymised data to be used.

In some studies it is not possible to seek consent, either because a very large sample size is needed to generate a robust result, and that would be practically difficult to obtain, or because seeking consent would introduce bias. The use of personal health data without specific explicit consent is sometimes essential for research for the health of the population. If researchers could not process medical records for research without specific explicit patient consent, they could not run cancer registries, which are extremely important in recording all cases of cancer; they could not monitor the hazards of medical procedures, such as the recently discovered implications of CT scans for long-term disease development; they could not assess the unexpected side-effects of routinely prescribed medicines; and they could not identify sufficiently large numbers of people with a particular disease to invite them to take part in trials for the treatment of that disease. The example I would give is the recruitment of 20,000 suitable people for the Heart Protection Study on statins, which has helped transform medical practice throughout the world. I am sure that many noble Lords use statins. This began with the identification of 400,000 patients with a hospital record of arterial disease and that information could not have been accessed without their permission. There are good examples of how this provision would cause a problem as it is enunciated in Clause 7.

We have a well-established, robust system of governance and oversight for non-consensual medical research in the UK; for example, through the Health Research Authority, a confidentiality advisory group, advising on Section 251 approvals to override the common law duty of confidentiality. Patient groups actively advocated for research exemptions during the passage of the GDPR—for example, through the Data Saves Lives campaign. I hope that, in Committee, we might get an opportunity to explore this further to see whether we can somehow modify the Bill to make this possible.

I come now to the public interest issues in the same clause. I understand that the Government intend the functions listed in Clause 7 not to be exhaustive, and to allow, for example, research conducted by universities or NHS trusts to use the public interest legal basis. Again, the noble Baroness, Lady Neville-Jones, briefly touched on that. It would provide much-needed clarity and assurance to the research community, particularly to those in the universities, if this could be made explicit in the Bill. A huge amount of research will rely on public interest as a legal basis. The Government have recognised the value of making better use of data for research, and the recent life sciences industrial strategy confirms the tremendous potential benefits for patients and the public if we can unlock the value of data held by public authorities and promote its use in the public interest.

There is currently a highly risk-averse culture in data protection, driven in part because people are unclear about the rules and what they can or cannot do with data for their purposes—hence I referred to the need for better governance of the data. This is why the public interest legal basis matters so much for research. The DP Bill is an opportunity to set out very clearly what the legitimate basis for processing personal data can be. Setting out a clear public interest function for research will give researchers confidence to know when they are operating within the law. If necessary, any specification of research in Clause 7 could be qualified by safeguards to ensure that the legal basis is used only when appropriate.

Can the Minister confirm that research conducted by, for example, universities or hospitals could use the public interest legal basis for processing personal data? Again, we may have an opportunity to explore this further in Committee.

I come now briefly to Clause 18 and the issue of safeguards. Where exemptions from data subject rights exist for research, robust safeguards to protect data subjects’ rights and interests are essential. Clause 18 transposes Section 33 of the Data Protection Act into the new Bill, but it will have wider application than it did in the Data Protection Act. Under the Data Protection Bill, all medical research undertaken without consent as the legal basis will be subject to the safeguards of Clause 18. Clause 18 prohibits the processing of personal data to support measures or decisions with respect to particular individuals. This is clearly problematic for any research that involves an intervention for an individual, which forms the bedrock of our understanding of a vast range of treatment for diseases.

Let me give the House some brief examples. Clinical trials and other interventional research will be undertaken with the consent of patients, which is ethically essential. However, the standard of consent may not be GDPR compliant as it is not always possible to specify how the data might be used beyond the purpose of the trial itself. Consent is therefore not the appropriate legal basis for much interventional research. This means that the safeguards built into the Data Protection Bill for processing or research purposes will apply. Clause 18 should not apply to interventional research. That research requires the processing of personal data to make decisions about the data subject as that is part of the necessary research design and oversight. If researchers cannot process data in that way, they will not be able to process information about a patient’s condition to assess whether they are eligible to participate in a clinical trial. They will not be able to process information about a patient’s condition to determine to which arm of the trial they should be allocated. They will not be able to remove individuals from a clinical trial if evidence arises of potential adverse effects during the course of the trial. There are significant implications.

A potential solution to this problem would be to modify Clause 18 to exempt research that has been approved by an ethics committee or some other such established safeguard. Implementation of the GDPR through the Data Protection Bill is an opportunity to provide clarity for researchers about the legal basis for processing personal data and the requirements of accountability, transparency and safeguards. At present, there is a great deal of conflicting advice about the implications of the GDPR and there is a risk that organisations will adopt an unnecessarily conservative approach to data protection for fear of committing breaches.

I should like to make two minor points. The Government have committed themselves in their response to Caldicott 3 to putting the National Data Guardian on a statutory footing by 2019. Do the Government intend to table an amendment to do that in this Bill? If they do not, the opportunity will be lost.

Lastly, the noble Lord, Lord Stevenson of Balmacara, mentioned the age of consent for children. The age of 13 seems a ridiculously low age for consent and I would support any amendments that he might introduce.

Data Protection Bill [HL]

Lord Patel Excerpts

Committee: 1st sitting (Hansard - continued): House of Lords
Monday 30th October 2017 Lords Chamber

Moved by

[Lord Patel]

12: Clause 7, page 5, line 6, after “includes” insert “, without prejudice to the generality of the expression “necessary for the performance of a task carried out in the public interest”,”

[Lord Patel (CB)]

My Lords, I shall speak also to my Amendments 14 and 111. Perhaps I may first thank the Minister and his team, who kindly agreed to see me and others to discuss what amendments I might have following my Second Reading speech. I am not sure that we resolved any issues, but I at least thank him for his courtesy and hope that, after today, we will resolve those issues.

I will speak first to Amendments 12 and 14. I beg the Committee’s indulgence for taking slightly more time than your Lordships might expect for a group of amendments, partly because I think this is the only time we are dealing with the major sector issues—the sector being the universities and other research institutions on which we are about to rely a lot for our economic growth; I will come to that. I am supported enthusiastically by the Wellcome Trust, the MRC, Cancer Research UK, the AMRC, the Sanger Institute, the Academy of Medical Sciences, the ESRC and many others. They are extremely anxious that what we do with the Bill does not in any way counter their ability to use data for productive research—and I do mean productive research. I declare an interest: I am a fellow of the Academy of Medical Sciences and of the Royal Society of Edinburgh, and I have a strong association with Dundee University. I cannot miss the opportunity to say that last week Dundee University was ranked number one globally for science innovation, beating every university in the United States. That is a fantastic achievement in science research. It beat all the so-called elite universities in England that we hear about, as well.

Clause 7 sets out a legal basis for processing personal data in the public interest. This reflects article 6(1)(e) of the GDPR. It is incredibly important to get the clause right as it will be the only legal gateway available for many research purposes. Why is this the case? Most research purposes rely on informed consent as a legal basis for processing. Consent is the basis of article 6(1)(a) of the GDPR. However, GDPR-compliant consent for the use of personal data is not always a feasible option as a legal basis. Consent is often important in the interests of fairness and transparency but will not be the appropriate legal basis for much research.

I will highlight two relevant sets of circumstances to illustrate why public interest is a necessary legal basis for many valuable research purposes. The first is where consent is not possible. There are a number of situations in which it is problematic to seek consent. Seeking consent may be impracticable where health data have been collected in the past and the time and expense seeking and approaching individuals for consent would be prohibitive. It may compromise effective population coverage; for example, requiring consent has been shown to have a negative impact on the quality of data for cancer registries. It may cause distress or harm in situations where patients may be inconvenienced or upset by being contacted for their consent to use their data for a research project, even if they do not subsequently object to the research going ahead; for example, contacting people about a study examining unexplained child deaths could cause serious distress. It may lead to bias because of self-selection bias among data subjects when asked a question. It may prevent studies large enough to produce meaningful results because the cost of seeking consent across a large number of people can be very high.

I will give one or two examples pertaining to the five issues that I have described. A study of more than 40,000 people demonstrated a highly significant association between the use of minor tranquillisers such as Diazepam and the risk of serious road traffic accidents. This was done through linking prescriptions issued by GPs and data on hospital admissions and deaths. By the way, this study had considerable implications for the safety of patients prescribed Diazepam, and their treatment, and of course also for other road users, but would not have been possible if data could not be processed on a consent basis. A study of the incidence of breast cancer in women was used to show that affluent women have a higher incidence than socially deprived women, but that socially deprived women had poorer survival statistics. This study used identifiable data without consent; it used hospital and GP records to look at a number of factors involved in cancer treatment.

Access to patient records also helps researchers to identify suitable participants to be invited to take part in studies. This is essential for evaluating new medicines, technologies and interventions for the prevention, diagnosis and treatment of disease. For example, in my own field, when the UK collaborative trial of ovarian cancer screening was set up to investigate different ovarian cancer screening methods, 1.2 million patients were invited to take part by post, leading to 200,000 women consenting to take part. It is a world-renowned study whose results have benefited the whole world. If consent were the only available legal basis, that recruitment strategy would not have been possible as these women had not given consent to the initial contact. Of the 1.2 million women contacted, only 32 women raised any concerns about being contacted.

These are just some of the many examples of vital research that, although very much in the public interest, cannot be done on the basis of consent. The research community has developed a system of robust and proportionate safeguards for these situations, to ensure that research on important topics can be undertaken using personal data where consent is not possible while protecting the research subjects. The use of personal data in these circumstances is controlled through safeguards. Studies using health data are reviewed by the Health Research Authority’s confidentiality advisory group; they must also receive a positive opinion from a research ethics committee to be eligible. The use of this data must be considered to be in the public interest, so we have safeguards.

In this country, we also have the benefit of a National Data Guardian for health and social care—a position I very much hope will be placed on a statutory footing through a Private Member’s Bill that is progressing through the other place. This guardian’s role is to protect patients’ rights and interests over data about them, within and beyond health and care services. The reason for this exposition into the governance of personal data in health research is to illustrate that the UK has a robust, well-established system of safeguards and oversight for processing personal data in the public interest when it comes to health and medical research.

I turn to the second issue: where consent cannot meet GDPR standards. Even with the most rigorous standards and through engagement with participants, consent may not meet the new, stricter standards specified by the GDPR as a basis for processing under article 6(a). The working party of EU data protection regulators—the article 29 working party—produced an opinion in 2011 on the definition of consent that ran to 38 pages. It is not a straightforward legal basis for researchers to use. Furthermore, data collected for research purposes often has significant value beyond the limited, original purpose of its collection. Research can proceed in unanticipated ways, with different teams using the data and processing it in such a way that the data subjects could not feasibly be informed at the outset of the full extent of how their data could be used, for what purposes or by whom.

My own unit started collecting data in 1958, before I even started as a junior doctor, and carried on collecting information manually for over 50 years. The consent we had from the pregnant women who had had babies was to us using the data to improve the services. Subsequently, 45 years later this was the only data available—in this country or worldwide—to prove that the intrauterine environment and the effect on that environment produces adult diseases. That is now well established. That information would never have been available if we did not have that data. We are proud that we have collected it.

Another example is UK Biobank. It relies on broad consent where the participants give consent for pseudonymised data to be used for a variety of research studies under certain conditions. This broad consent approach is approved by an ethics committee and reduces the burden on participants because they do not need to be contacted for consent for each new study. I have no doubt that my noble friend Lady Manningham-Buller will have something to say about this as she is the chairman of the Wellcome Trust, which is the holder of the data.

--- Later in debate ---

[Lord Clement-Jones (LD)]

My Lords, that provokes me to add something. I am not entirely clear whether we are talking about something that is too narrow within the GDPR, or whether it is a lack of a suitably wide derogation on the part of the Government as part of the Bill. For all the reasons that the two noble Lords have mentioned, it seems extraordinary that the beneficial activities that they are discussing are not included as exemptions, whether explicitly or implicitly. It may be that the Minister can give us greater comfort on that, but I am not clear what is giving rise to the problems. As we heard in earlier groupings, I am a fan of having something more explicit, if anything, in the Bill, which is particular perhaps to medical research and other forms of research in that sort of area. But it is not clear whether that is going to be permissible under the GDPR or whether the Government can actually derogate from it in those circumstances.

[Lord Patel]

I shall respond to some of the points raised. First, on the research ethics committee, we established through legislation—and I remember the debates that we had—a national Research Ethics Committee to deal with all applications for biomedical research, but particularly research involving patient data and transfer of data. If I as a clinician want to do a trial, I have to apply to that committee with a full protocol as to what consent procedures and actual research there will be, and what will be the closing time of that consent. If I subsequently found the information that I had could lead to further research, or that the research that I had carried out had suddenly thrown up a next phase of research, I would have to go back to the committee and it would have to say, “Yes, that’s part of the original consent, which is satisfactory to progress with the further research”. It is a robust, nationally driven, independently chaired national ethics committee, apart from the local ethics committee that each trust will run. So the national ethics committee is the guardian.

Furthermore, there is a separate ethics committee for the 500,000 genomes project, run by the Wellcome Trust and other researchers; it is specifically for that project, for the consent issues that it obtains, the information given at the time when the subject gives the consent and how the data can be used in future. The genomes project aims to sequence all the 500,000 genomes, and to link that genome sequence data with the lifestyles that people had and diseases that they developed to identify the genes that we can subsequently use for future diagnosis and treatment—and to develop diagnostic tests that will provide early diagnosis of cancers, for instance. The future is in the diagnostic tests. Eventually we will find them for diseases which have not developed but which have a likelihood of developing. Those diagnostic tests will identify the early expression of a protein from a gene and then find a treatment to suppress that expression well before the diseases develop, rather than waiting until the cancer develops and then treating it.

All this is based on the data originally collected. At this stage, it is impossible to know where that research will lead—that is the history—apart from the clinical trials which are much more specific and you get consent for them. I realise that there is a limit to how much the text of the Bill can deviate from the GDPR, unless it is dealing with specific issues which the GDPR permits member states to provide derogations for. I realise that, post exit, the UK will need an adequacy agreement and some equivalent, neutral recognition of data protection regimes between the UK and the EU. We need that for the transfer of data. For instance, the noble Baroness, Lady Neville-Jones, has talked about extremely rare diseases, which require the exchange of data across many countries because their incidence is low and no one country could possibly have enough information on that group of patients.

The research exemption does not undermine agreement on Clause 7—which is what the noble Lord, Lord Clement-Jones, was leading up to when he asked about the ethics committee. The noble Baroness, Lady Neville-Rolfe, suggested that medical research should be possible through the research exemption, but that has to be wide enough yet not specific enough to encompass wider exemptions. I hope that the Minister will come up with that trick in an amendment which he might bring forward. It will not be restrictive, yet protect the patient’s personal interest.

There is a research exemption for processing specific categories of data, including health data. The legal basis for this is through article 9 of the GDPR, referred to in Part 1 of Schedule 1 to the Bill. However, all processing of personal data also needs an article 6 legal basis: research is not exempt from needing this. I am arguing today that research needs that exemption, defined in wide enough terms. For processing special categories, you need both an article 6 and an article 9 legal basis. We need to have provision for both in the Bill. One of the article 6 legal bases is consent and I have explained why this is not suitable for much research. The other feasible route for universities and other public bodies processing personal data for research is public interest. This is why it is so important to be clear on what processes can use this legal basis.

There was serious concern about the likely impact of the GDPR on research as it was being drafted. However, this was successfully resolved and it provides the necessary flexibility for the UK to create a data protection regime that is supportive of research in the public interest. The Government, and other UK organisations, worked hard to make sure that this was the case. The provision is there: it is now for the Government to act on it. It is also important to seek an adequacy agreement post Brexit: we will have to have one. It will be vital to consider the need to retain, post Brexit, cross-border transfers of data for research. I give the same example of rare diseases as the noble Baroness, Lady Neville-Jones, used. The Government have recognised the value of retaining a data protection regime consistent with the EU, but the research community would welcome knowing whether it will seek a status of adequacy as a third country or an equivalent agreement.

The plea I make is that unless we include a provision, and there are exemptions which can be written in the Bill in the format that is required, we will not be able to carry out much of the research. A question was asked about the life sciences industrial strategy. It is the key pillar of the Government’s industrial strategy Green Paper. It relies on data that the NHS collects and the data that the science community collects and marrying up the two to produce, and lead the world in, treatments and developing technologies. If we are not able to do this, the whole thing will be unworkable.

[Lord Stevenson of Balmacara]

I am very grateful to the noble Lord for a very full response. It was quite a narrow question. I did not need all of that response but I have learned a lot more in the last few minutes—

[Lord Patel]

I thought that it might have been leading up to more.

[Lord Stevenson of Balmacara]

It might have been. The noble Lord has exposed a much greater issue than we thought we were grappling with. The case has now been well made that there are four pillars rather than the three that I adumbrated before. We seem to have a case for special treatment. I am sure that the noble Lord, Lord Patel, with his assiduous workload and high work rate will have made this point several times to officials and Ministers. However, if he is not getting the answers he needs, we have a bit of a problem here, so I hope that the Minister will be able to help us on that.

This goes back to an earlier debate about the public interest. It again worries me—I think the noble Lord, Lord Clement-Jones, touched on this—that “public interest” is becoming an overworked term for rather too many issues. In other words, the argument here is not about the public interest at all; it is about the public good that would come from a differential approach, safeguarded by the ethics approach—I said that was new to me and I am grateful to hear about it—and about reinforcing the contribution that would make to an industrial strategy covering a much broader range of understanding about what we are doing, thus making this country a world centre for all that. So there is a power behind this that I had not appreciated and I am grateful to the noble Lord for explaining it. It is easy to analyse it in this way and come up with the answer that he might want, but is it the right way forward on this?

The noble Lord was wise to point out that there are constraints within the GDPR and limits on what the Government can do, but it must be possible to think more creatively about the problem that has come forward. If, as the noble Lord said, the GDPR opens up the question of not requiring consent in that very formal sense, and we are looking for an evidence-led policy initiative which addresses the public good, it behoves Ministers to think very carefully about how one might take it forward.

This may or may not be the only issue that requires this sort of approach, but the case has been made on its merits that more needs to be done. Listing existing bodies that are not included, to put it in the positive, in a list of issues—for example, the administration of justice is a function of the Houses of Parliament—is not the way into this issue. I appeal to the Minister to think creatively about this because it seems to me that we need a new approach here. I am very convinced by that and look forward to hearing what the Minister says.

--- Later in debate ---

[Lord Stevenson of Balmacara]

I think we have already made the point and we do not need to come back to it. What I took from the noble Lord’s earlier contribution was that one way in which medical research is developed and carried out involves a consent process, and we would not want to change anything in that sense. However, for lots of reasons—the noble Lord gave three or four—you cannot always use consent. You may not want to go to the patient, or perhaps you cannot go to or find the patient. Alternatively, the noble Lord made the more general point that you often collect data without any real sense of where it might go in the future. We are not saying that any of that is good, bad or indifferent—one is no better than the other—but they all need to be considered in a broader understanding of the public good being best served by having the least restrictive system concomitant with appropriate procedures being in place. That is the line, with the ethics committee sitting at the top, that gets you to the point where that would be a fruitful conversation to have with Ministers.

[Lord Patel]

I must make the issue absolutely clear. If I did not do so before, I will set it out again slowly and carefully. Medical researchers are not asking to be allowed to do research without consent. They are asking for consent to be interpreted not in a narrow sense but in a sense that will allow research to continue with consent having been obtained. I shall give an example. When I chaired the UK Stem Cell Bank, we made it clear that consent would have to be obtained from those who donated stem cell material, including embryonic stem cells. Consent was given on the basis that the embryonic stem cells would be used for research to improve healthcare, but at that time it was not possible to say which healthcare.

Embryonic stem cells, properly kept, are immortal: they can survive for generations. There is a classic example of this. Most of your Lordships are familiar with the lady whose tissue was taken in 1950. Her name was Henrietta Lacks—hence the cells are called HeLa cells. These aggressive cervical cancer cells were taken from her in the United States without consent, but they still exist in every laboratory in the world. A billion dollars-worth of drugs have been developed and marketed using HeLa cells. If consent had been obtained, what would that consent have been for? Exactly the same applies to consent for stem cells—it is for the development of drugs.

Researchers are not saying that we should not have consent. They are saying that there ought to be an authority like the ethics committee that gives consent and to which you can go back and say, “By the way, I have that material and I have found more. I am still developing drugs but this is not the same”. I hope I have been clear about that. We are looking for exemptions that are wide enough.

Perhaps I may come back to the matters raised by the Minister and refer, first, to the public interest issues. I understand that the Government do not intend the functions listed in Clause 7 to be exhaustive and to allow, for example, research conducted by universities or NHS trusts to use the public interest legal basis. It would provide much needed clarity and assurance for the research community if that could be made explicit in the Bill. That, basically, is all we are saying on the public interest. There is currently a highly risk-averse culture in data protection, driven in part because people are unclear about the rules and about what they can or cannot do with that data and for what purposes. If it is made clear what they can do or where they have to go to make it clear, that will be helpful. This is why the public interest legal basis matters so much for research. The Data Protection Bill is an opportunity to set out very clearly the legitimate basis for processing personal data, setting out a clear public interest function for research that will give researchers the confidence to know when they are operating within the law.

I will now make a comment about what the Minister said about the safeguards. My Amendment 111 is to Clause 18, which prohibits the processing of personal data to support measures or decisions with respect to particular individuals. This is clearly problematic for any research that involves an intervention for an individual, which forms the bedrock of our understanding of a vast range of treatment of diseases. The range of law covering the use of personal data for research is complex, governed both by data protection law and common law, where duties of confidentiality toward the data subject exist. In my view, the implementation of GDPR through the Bill is an opportunity to provide clear information to researchers about the legal basis for processing personal data and the requirements of accountability, transparency and safeguards.

It is therefore essential that authoritative, comprehensive and unambiguous guidance is created to assist with this transition to a new data protection law. The Health Research Authority is working on guidance for health research, but researchers are urgently in need of this advice to ensure they are compliant by May 2018.

Those are my comments in response to the Minister. I am labouring these points today because this is the only opportunity I will have in Committee to debate these issues at length. I do not wish to rehearse this at Third Reading if we can resolve these issues by communication and find a way out.

Amendment 12 withdrawn.

Data Protection Bill [HL]

Lord Patel Excerpts

Report: 1st sitting: House of Lords
Monday 11th December 2017 Lords Chamber

[Baroness Chisholm of Owlpen (Con)]

My Lords, I am pleased to be moving the Government’s technical amendments this evening, and, in particular, Amendments 3, 4 and 5 which respond to the concerns raised by the noble Baroness, Lady Royall, and others on behalf of the UK’s universities, schools and colleges. They were worried that the Bill would restrict their ability to process the data of alumni for fundraising purposes. As the noble Baroness explained in Committee, universities, schools and colleges were concerned that being badged as public authorities by Clause 6 would mean they could not rely on the legitimate interests processing condition in article 6(1)(f). This is because the final sentence of article 6(1) states:

“Point (f) … shall not apply to processing carried out by public authorities in the performance of their tasks”.


Universities also doubted whether, in the context of alumni relations, they could rely on article 6(1)(e) of the GDPR, which relates to processing necessary for the performance of a task carried out in the public interest. Although there is a good argument that any fundraising or similar activity which allows universities to improve facilities for students would be considered a “public interest” task, the Government can see why universities might doubt whether all their fundraising work would fall into that category. If universities could not rely on article 6(1)(e) or (f), they say they would be left without an obvious processing condition in situations where obtaining the data subject’s consent, at least in the GDPR sense of that term, was not a realistic option.

Government Amendments 3, 4 and 5 address these concerns by making it clear that public authorities will be treated as public authorities for data protection purposes only when they are carrying out their public tasks. To the extent that they carry out non-public tasks, they would not be defined as a public authority for the purposes of the GDPR and would not be prevented from relying on the legitimate interests processing condition.

We recognise that the amendment does not refer to universities, schools or colleges by name. This is deliberate, meaning that any public authority which is processing data for non-public functions will be able to rely on this provision. The education sector is not the only one to have these worries. I know, for example, that our museums and galleries would welcome the same degree of flexibility, and this amendment will ensure they have it. I am grateful to the noble Baroness for raising this matter and I hope these amendments will provide universities and other similar organisations with the reassurance they need.

I will not go through the remaining amendments in the group one by one, but instead pick out a few which I think may be of broader interest—for example, Amendments 145 and 146. In Committee, my noble friend Lord Hunt of Wirral was among those to express concerns about the inclusion of the term “other adverse effects” in the definition of damage in Clause 159. He asked whether this was broader than the definition in the GDPR. As I set out then, the Government’s intention in including a definition of damage in Clause 159 was to provide clarity, specifically in relation to the inclusion of distress. Clause 159 does not seek to provide a wider definition of damage than is currently provided in the GDPR; nor indeed could it.

None the less, in light of the concerns expressed by my noble friend, the Government have reconsidered this issue and decided to amend the definition to ensure that it is as clear as possible and to minimise the risk of any uncertainty such as that which concerned noble Lords. The amended definition now simply states that the reference to “non-material damage” in the GDPR includes distress. The definition of damage for the purposes of the law enforcement and intelligence services regimes is set out separately in Clause 160. Amendment 146 makes a similar change to that definition so that it is as clear as possible and no longer refers to “other adverse effects”. I beg to move.

[Lord Patel (CB)]

My Lords, I will comment on Amendments 3, 4 and 5. The Minister and the noble Baroness may well feel that I do not give up, and I agree: I do not. I of course understand clearly what the Government are trying to do with the amendment from the noble Baroness, Lady Royall of Blaisdon—that they have agreed to get that into the Bill. It is helpful to know that public bodies need to be defined as such when they are processing data for tasks that are not defined as tasks in the public interest. This opens up the possibility of their instead using legitimate interests as a legal basis under some circumstances: for example, as has already been mentioned, for universities contacting alumni for fundraising purposes.

My point is different: universities and their research activities and how that is recognised, which we discussed. Here, it is more pressing to be clear on what counts as a task in the public interest, since public bodies will need to determine which legal basis is appropriate to the processing they are undertaking in different circumstances. For example, is research conducted in universities a task in the public interest, in which case the university would be considered as a public body for the purposes of the Bill, or is it not? In the latter case the university is not a public body for research purposes, and the research is therefore conducted on the legal basis of legitimate interest.

These differences matter, particularly as the GDPR requires data controllers to be clear on the legal basis they are using. How are public bodies such as universities to make this determination? The clearest answer would be, as I indicated in Committee, that the ICO gives guidance. I understand that the Government cannot direct the ICO to give guidance, so a way needs to be found to clarify which tasks fall under the public interest basis, specifically using the example of university research to provide that clarity. I would be grateful if the Minister commented on that.

Data Protection Bill [HL]

Lord Patel Excerpts

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

[The Earl of Erroll (CB)]

My Lords, I will say a couple of things on this in full support of the proposition made by the noble Baroness, Lady Neville-Jones. These issues are very complicated. We tend to try to brush them aside and hope that they will be dealt with by the person who is enforcing and regulating. But that can be dangerous, because they will find it very difficult as well, and sometimes, if you do not have the intention in the Bill, it may just not happen.

This is important because, although I fully support the intention and objectives of the GDPR in the Data Protection Bill in front of us, which is there for all the right reasons, we have to be careful not to throw out the baby with the bathwater. This is one of those instances where, in trying overzealously to introduce a rules-based system in a complex world and a complex society, you find unexpected consequences. Some of them cannot be defined terribly easily in regulation, but I think it would be wise to put this in an amendment.

We in this House tend to think in principle much more than another place. To try to deal with this in another place when it gets there may be unwise in case they run out of time. It would be good to put something in the Bill in this House at Third Reading, if the Minister were so minded, and I would wholeheartedly support that.

[Lord Patel (CB)]

My Lords, I have already spoken on this at length and I do not intend to repeat myself, but I support the amendment from the noble Baroness, Lady Neville-Jones. This is a very important database. It is not just national but international, and it is difficult to collect. That is why I am glad that an accommodation has been made to support the amendment.

[Lord Stevenson of Balmacara]

My Lords, I add my voice in support of the noble Baroness’s amendment and wish it well. I suspect she has run into the logjam that constitutes the waiting list to see the Bill team and the Ministers, who have been worked so hard in the last few months. But I hope it will be possible, given that there is a bit of time now before Third Reading, for this matter to be resolved quickly and expeditiously before then.

--- Later in debate ---

The amendments have been developed in close liaison with the Wellcome Trust and I am grateful to it for its help. On that note, I hope my noble friend feels able to withdraw her amendment and that all noble Lords feel able to support the government amendments in the group.

[Lord Patel]

Before the Minister sits down, I thank him and his team immensely for taking on board the concerns that I and others expressed about the interventional medical research that the government amendments will now allow. It cannot be overstated: this will now allow important research, including clinical trials, to be undertaken that will advance medical research in the United Kingdom, making it an attractive place to do such research. I thank him immensely; I am most grateful.

[Baroness Neville-Jones]

My Lords, I am extraordinarily grateful to noble Lords who have spoken in support of my amendment, and for the comprehension that the Minister has shown for the work of the patient support groups. They will have greatly appreciated hearing how much the Government support what they do.

I very much hope that we can work on an amendment that will both meet the Government’s concerns and effectively cover the work of those organisations, which, as I think the Minister understands, work in difficult circumstances. They stand ready to participate with the Government in getting language that will both cover their concerns and ensure that we do not open the door to those for whom it is not intended. On that basis, I beg leave to withdraw the amendment.