Genomics and genome editing in the NHS Contents

4Access to genomic data

59.The introduction of whole genome sequencing into routine NHS care will lead to growing volumes of genomic data being linked to medical data, raising issues around consent and access. Here we focus on access to patient data for clinicians and researchers, pharmaceutical companies and insurance companies.

Consent and the NHS ‘Social Contract’

60.The NHS Constitution states a patient’s right to request that their confidential information is not used beyond their own care and treatment.172 The Government promised in its response to the National Data Guardian’s 2016 Review of Data Security, Consent and Opt-Outs173 to “give people the choice to opt out of sharing their data beyond their direct care, which will be applied across the health and social care system”.174 However, since its 2016 review, the National Data Guardian has published an initial review of data sharing for genomics in the NHS, which concluded that genomic medicine is blurring the distinction between a patient’s direct care and secondary uses of their data:

Interpreting the significance of a genetic variant can require access to information about other people, to assess, for instance, how often the variant is linked with disease or not. This may well involve access to data from other patients under the care of different health professionals, potentially living in different parts of the country or even the world.175

Consent in the 100,000 Genomes Project

61.The 100,000 Genomes Project uses a ‘broad consent’ model, under which enrolled participants agree that their past and future health records can be accessed by ‘approved individuals’ at any point, and used to study many different medical conditions, not just ones that affect them. Genomics England explained that this broad model “permits the Project to use participant data for an unspecifiable range of future research, subject to appropriate oversight, in recognition that for example, some future tests have not been developed yet”.176

62.Our predecessor Committee identified a potential issue about the “suitability of the ‘broad consent’ model being employed by the 100,000 Genomes Project, and whether the consent materials and patient recruitment techniques fully inform participants of the potential commercial uses of their data”.177 The National Data Guardian told our predecessor Committee that she “welcomes the significant amount of work that has gone into developing Genomics England’s consent model and the care that has been taken to ensure that participants are enabled to make informed decisions about the implications of their agreeing to genomic sequencing”.178 In contrast, EthicsAndGenetics, a campaign group, told our predecessor Committee that it believed that participants in the 100,000 Genomes Project had been misled over the degree of anonymisation of their data,179 although this was not highlighted as a material issue for concern during our own inquiry.

63.The pseudonymisation process used in the 100,000 Genomes Project involves replacing most identifiable information with a unique identifying code for each participant.180 Professor Mark Caulfield, of Genomics England, explained in February 2017 that “we remove the direct identifiers, which makes it very difficult for anyone to identify [participants]. There is no name, address or postcode. There is an age and a year of birth, but nothing more precise than that”.181 He said that pseudonymisation is used instead of complete anonymisation so that relevant research findings can be fed back to the appropriate participant:

When you anonymise the data, the technical effect of that is to disconnect the data from the original person. What that means is that I cannot add other data, because I no longer know the true identity of that person. It would not be safe in a healthcare setting to do that. […] if we could not connect [research findings] back, I could not return diagnoses from the research environment to the identifiable person.182

The Data Protection Bill would make it an offence “for a person knowingly or recklessly to re-identify information that is de-identified personal data without the consent of the controller responsible for de-identifying the personal data”.183

64.The current consent form for the 100,000 Genomes Project informs patients that their “data, and information from [their] samples, will only be used by researchers in a form that protects [their] identity”.184 It also makes clear that research organisations accessing their data “may include commercial (for-profit) companies”.185 Professor Caulfield told our predecessor Committee that “patients have said that they are fully informed. We have a participant panel, made up of people who are enrolled in the project. They are incredibly supportive of the material”.186 Professor Michael Parker, Chair of the Genomics England Ethics Advisory Committee, told our predecessor Committee:

The approach to consent and the consent materials that are used in the Project were subject to scrutiny by […] an independent Health Research Authority ethics committee. The materials were developed with patients and groups through consultation. They have been evaluated since and the participants have been happy with those, but those materials are very explicit and highlight the fact that these potential risks exist.187

Consent in the Genomics Medicine Service

65.Following up a recommendation from the CMO’s annual report, NHS England and Genomics England have convened a Patient Consent in Mainstreaming Genomic Medicine Working Group to develop a consent model for the NHS Genomic Medicine Service.188 The PHG Foundation, which is represented on this group, told us that they would examine in particular “the implications of seeking a form of hybrid consent for both clinical care and research”.189 Fiona Murphy told us although such an approach had not been an obstacle to recruiting people into the 100,000 Genomes Project, “it might not be practical on a day-to-day basis to use the broad consent model”.190 Dr Burton similarly believed that the broad consent model “may be too complex [for routine genomic sequencing in the NHS]; it is rather unwieldy for day-to-day use”.191

66.Dr Helen Firth, of the Wellcome Sanger Institute, highlighted to our predecessor Committee how important data sharing was for patient safety:

Many variants are just not interpretable without seeing them in the context of variants of other patients with a similar disorder, and in the context of the variation that you see in the normal population. If you try to do it without either of those things, it is only a small number of very well-known variants that you could reliably provide safe advice on.192

Other genetics professionals saw data sharing as “necessary and urgent for there to be confidence that the best and safest care is provided to patients”.193

67.The Minister, Lord O’Shaughnessy, saw data sharing in genomic medicine broadening the meaning of ‘direct care’:

The point is that genomics, in effect, breaks down the barrier between research and direct care, because your data can go into research, produce results that mean they know some treatment will work and some will not, and then flow straight back to you without having to go all the way round. That changes what we mean by direct care, because research becomes an integrated part of direct care.194

The CMO noted, however, that data used for research is currently treated very differently to data used for direct care in the NHS:

There is a sharp divide in the NHS between data for direct clinical care and data for secondary uses of commissioning, regulation and research. There are major differences in their legal and Information Governance frameworks, funding arrangements, ethics, consent requirements and patient and public expectations.195

68.The CMO’s report raised a potential challenge posed by ‘genetic exceptionalism’—the notion that genetic data is more sensitive than other types of medical data. She argued, however, that this does not stand up to scrutiny (in line with the Government’s independent Information Governance Review).196 Dr Hilary Burton and Fiona Murphy, as well as Genetic Alliance UK, similarly believed that genomic data should not be viewed as any more sensitive than other personal or medical data.197 The CMO nevertheless cited the importance of routine large-scale data sharing as a reason “to rethink—or at the very least reinforce—elements of the current ‘social contract’ as set out in the NHS Constitution, to take account of the advances in genomic medicine”.198 She outlined three main differences between genomic medicine and traditional healthcare that could challenge the existing contract: greater integration of, and complementarity between, healthcare and medical research; an increasing need to collect, store and share information at scale; and less certainty in how data will be used and what outcomes it will provide, due to evolving clinical practice.199

69.The Minister did not think, however, that the Constitution needed to be changed:

I do not think we need to change the Constitution, but we need to explain to people the nature of the way medicine is going […] it needs to be interpreted very carefully, and explained as such.200

The CMO agreed that “that is one way of doing it, as long as we end up at the right place”.201 It was not, she said, “something where a Minister can say, ‘Change it.’ It needs public debate and discussion”.202 Indeed, one of the recommendations from her report was for Genomics England and NHS England to “engage in an extensive public dialogue on the shared social contract between patient, public, clinicians and academics in relation to genomic medicine”.203

70.In response to the CMO’s recommendation, Genomics England has proposed a “Public Dialogue programme that aims to build trust in future approaches and ensure that any potential barriers can be identified, understood and addressed”. This will build on the ‘Genomics Conversation’ programme that ran in 2016.204 The Minister also highlighted work being done by medical research charities “to test people’s worries and concerns, and how to meet them and reassure them”.205

71.Professor Chinnery, of the University of Cambridge, and Fiona Murphy, of the Scottish Genomes Partnership, noted that obtaining consent from those participating in the 100,000 Genomes Project had not been problematic.206 However, such observations relate to cohorts of patients with specific diseases and who received substantial guidance through the consent process, which our witnesses agreed would be too demanding for routine genomic sequencing. Dr Burton thought that awareness among the general public of the “absolute critical need for data sharing” was insufficient.207 A recent survey of the general public conducted by the Wellcome Sanger Institute found that 82% had either never heard of the term ‘genomics’ or had little understanding of it.208

72.In 2016, Genomics England’s ‘Genomics Conversation’ programme found that access to individual data was the most “compelling and consistent issue” for the public, and that although most people “are happy for their data to be shared appropriately and used for wider social benefit”, there was still unease about non-NHS access to health data and data security.209 The CMO found that there is still a problem with public understanding and support for genomic data sharing:

People were totally surprised when I said it is not in a patient’s interests not to agree to put their data into the research database because they will get an out-of-date result, if one at all. That sort of concept is very difficult for a lot of people, but we have had a lot of support from patient charities and from many people. It is going to be a long haul.210

73.Data sharing for genomic medicine provides similar opportunities and challenges as the recent ‘’ initiative, which was postponed and ultimately cancelled in 2016 following the National Data Guardian’s review and poor public awareness campaigns.211 The Minister told us that the “shadow” of the experience “hangs over” the NHS genomics project, “but in a way that is not unhealthy”.212 He cited data security and patient involvement as the two areas that had undone previous attempts at data sharing, but thought now that “we have a much deeper understanding of the need to communicate to patients”.213 Patients, he told us, will be able to opt out of sharing their genomic data. It is unclear, however, what level of care patients who opt out of sharing their genomic data would receive.

74.The importance of data sharing for genomic medicine presents a challenge to the concept of restricting the usage of patients’ data to their direct personal care. Whether or not the NHS Constitution is changed to reflect the increasingly blurred distinction between genomics research and clinical care, public support will be vital to the delivery of an NHS Genomic Medicine Service. It is encouraging that a high proportion of patients involved in the 100,000 Genomes Project consented to sharing their genomic data, but the ‘broad consent’ process used in the Project is unlikely to be feasible for routine genomic medicine in the NHS without an extensive and continuing public debate to raise public understanding and acceptance.

75.We recognise the Government’s determination to implement the General Data Protection Regulation but it should now significantly increase its efforts to raise public awareness of genomic medicine, and the data-sharing needed to enable it, ahead of the introduction of the planned Genomic Medicine Service. The Government should confirm and publicise the consent framework to be used for the Genomic Medicine Service as soon as possible, to give time for NHS staff and patients to be aware of data sharing implications before routine genomic medicine is rolled out. Following a public consultation, the Government should provide clear information regarding what data will be collected, who will be able to access that information and for what purposes, and an explanation of the benefits and risks involved in sharing genomic data.


76.A public survey by the British Science Foundation found that although most people would be content for university researchers or NHS workers to access their genomic data (72% and 67% respectively), and opinion was mixed on access for pharmaceutical companies (36% content, 36% not content), 95% said they would not be content for it to be shared with insurance companies.214 With the NHS providing mostly free and comprehensive healthcare to all, according to clinical need and not ability to pay,215 the impact of ‘predictive’ genetic test results216 on access to medical insurance in the UK will be smaller than in countries with predominantly private health insurance. Nevertheless, predictive genetic test results could in principle affect access to other insurance policies such as life assurance, income protection or private health insurance. It is important that patients are not deterred from undertaking genomic diagnostics as a result of fears relating to any consequences for insurance.

77.Insurance contracts typically follow the principle that both parties to the contract should have equal access to all relevant information. Insurers worry that information asymmetry—where consumers know more about their genetic disposition to future health problems than insurers—could lead to ‘adverse selection’ problems, with those consumers most at risk disproportionately applying for life insurance policies. As the Association of British Insurers (ABI) put it, “on a large scale, [adverse selection] could potentially affect the viability of some insurance products, given that insurers price products by assessing and pooling the risk of their policyholders”.217

78.The Government has agreed a Concordat and Moratorium on Genetics and Insurance with the ABI.218 Under the Concordat, insurers accept that genetic test results are relevant only to life, critical illness and income protection insurance. Customers will not be required to disclose the results of predictive genetic tests for policies covering up to £500,000 of life insurance, or £300,000 for critical illness insurance, or paying annual benefits of up to £30,000 under income protection insurance. Above such limits, insurers may seek information about results from specific tests approved by the Government—so far only for Huntington’s disease where the life insurance is over £500,000.

79.Although insurers can ask for predictive test results only in specific circumstances, consumers must disclose any additional screening or preventative treatment they receive as a result of genomic sequencing. Genomics England guidance highlights that such additional screening or treatments “may alert the insurer to closely examine your personal medical and family history in order to be able to fully assess your application”.219 However, it also states that:

Any additional screening or preventative treatment that you undergo which is known to reduce the risk of a particular condition will be taken into account by the insurer in assessing your application and setting your premiums, which could result in a better outcome for you.220

Fewer than 5% of insurance customers are currently estimated to be affected by disclosure requirements,221 and the insurance industry has reported no more than one complaint on this issue per year.222

80.The Concordat and Moratorium agreement was last renewed in 2014, and applies until November 2019. It was due to be reviewed in 2016 but this was delayed as a result of the CMO’s report and is currently being discussed by the Government and the ABI.223 The introduction of the NHS Genomic Medicine Service could significantly increase the number of people receiving predictive genomic test results, and potentially affect insurers’ willingness to renew the Concordat and Moratorium agreement in the future. The current agreement states that:

Insurers are only prepared to bear the risks and costs of this non-disclosure [of predictive genetic test results], which are spread across the broad pool of policyholders, whilst the number of policies affected by non-disclosure of predictive genetic tests appears to be low.224

The ABI noted that genetic testing had already become more widespread since the original Concordat and Moratorium in 2001, without concerns of adverse selection materialising. For the moment, they did not have any plans to seek approval for the use of predictive genetic tests beyond Huntington’s disease.225 The ABI highlighted, however, that “the increased prevalence and availability of genetic testing could theoretically over time lead to a situation where there is a significant information asymmetry between insurers and customers”.226

81.The ABI supported the flexibility afforded by the voluntary approach of the Concordat and Moratorium, because it allows “all sides to adapt and review the agreement as and when necessary”.227 They argued that inflexible financial limits had already caused problems in jurisdictions that have adopted legislative approaches, noting that Switzerland is currently reviewing its legislation.228 A 2016 review of regulatory approaches in insurance markets found legal restrictions or bans on insurers’ use of predictive genetic data for life insurance in several European countries as well as the USA.229 In 2017, Canada made it illegal for insurance companies or employers to request genetic testing or ask for the results.230 The CMO’s report concluded that “the UK’s voluntary and soft-law regulation of the use of genetic data by insurers has proved to be flexible and responsive to changes in the genomic technologies”, and supported a continued “flexible semi-voluntary” regulatory structure.231 She also argued that legislative approaches “would raise questions about the use of other, non-genetic, information that is predictive of ill health”.232

82.A large proportion of the public express unwillingness to disclose their genomic data to insurance companies. It is important that this concern is recognised, and that measures are in place to avoid large numbers of patients refusing their consent to receive additional findings from whole genome sequencing as a result of such concern. A voluntary Concordat and Moratorium, agreed between the Government and the Association of British Insurers, currently restricts insurers’ ability to ask for predictive genetic test results. As whole genome sequencing is rolled out across NHS England, the terms of the Concordat and Moratorium may come under pressure.

83.We recommend that the Government seeks to renew the Concordat and Moratorium as soon as possible. The current review should take into account the introduction of whole genome sequencing as part of the NHS Genomic Medicine Service, the likely increase in predictive genetic test results this will cause, and the potential for more conditions to be predictable as genomic medicine progresses. The Government should set up systems to monitor any reluctance among patients to undertake genomic testing due to insurance concerns, assess the experiences of countries that ban insurers’ use of predictive genetic test results (addressing in particular the ABI’s concerns regarding the potential for adverse selection problems), and be ready to consider putting the Concordat and Moratorium on a statutory footing if the current voluntary system begins to limit the uptake of predictive testing.

The genomics industry

84.A 2015 report on the UK genomics industry, commissioned by the Government’s Office for Life Sciences, estimated that the global genomics industry was then worth over £8bn and forecasted this to grow rapidly.233 Its value would come mostly from delivering diagnostics and targeted therapies, or in informing drug development. The CMO’s report described the complexity of ascribing health conditions to particular genetic causes, and how this requires “the sequencing of very large numbers of human genomes and the correlation of those with data on each individual’s clinical conditions”.234 The NHS, as “the single biggest integrated healthcare system in the world”,235 would make that possible. Genomics England noted that the 100,000 Genomes Project is unique in its “ability to link [genomic] sequence data to longitudinal patient records from across primary, secondary and tertiary care for the whole of the diverse population of a country”,236 and that “significant value is concentrated in our dataset—the data accessed through sequencing—and the ability to study this alongside other health data”.237 Sir John similarly highlighted that the NHS has “remarkable longitudinal records of patients, from birth to death”.238 The UK, he told us, is “multiple years ahead of the rest of the world in handling whole genome data”.239 He saw two distinguishing features of the UK’s competitiveness in life sciences:

One is the NHS and the other is access to large amounts of data in the NHS around whole patient care. Those two things are unique. Almost no one else can do it at scale, and that will, without a shadow of a doubt, drive an AI revolution that will change healthcare globally.240

85.Professor Bell’s Life Sciences Industrial Strategy argues that “in projects where data is the key infrastructure, the UK needs to ensure that some of the benefits are returned to the healthcare system, including access to technology”.241 In our inquiry into ‘Algorithms in decision-making’, Hetan Shah, of the Royal Statistical Society, urged public sector bodies to be more confident in realising the value of their data, underlining that “the public sector have the magic dataset, on which they have a monopoly”.242 Professor Bell believed that access to genomic and related data would benefit UK companies trying to capture a share of the growing market in genome data interpretation.243 Genomics England emphasised that partnerships between the NHS and industry were needed in order for new medicines and diagnostics to be developed off the back of genomic data:

Without the involvement of industry, the NHS and Genomics England would not be able to get the new medicines, treatments and diagnostics for patients that should come from this project. Medicines and diagnostics are always developed outside the NHS and government by the private sector.244

Dr Magdalini Papadaki, of the Association of the British Pharmaceutical Industry, emphasised that “clinically relevant patient data and patient outcome data are not wholly owned by the NHS; some are owned by the companies that run the clinical trials”.245

86.Genomics England had indeed collaborated with industry and provided access to “a selection of anonymised whole genome sequences” through the GENE Consortium,246 which consisted of 13 industrial partners each paying £25,000 or £250,000 to participate, depending on their size.247 There were mixed opinions, however, on how well the GENE Consortium had worked. The Association of the British Pharmaceutical Industry welcomed “the effort that Genomics England has provided in maximising value of the data so far collected, while maintaining strict safeguards on patient privacy and data protection through the development of ‘safe haven’ infrastructure”.248 The Wellcome Sanger Institute, on the other hand, was concerned about “a lack of clarity around data sharing rules and the tools available to those who may be interested in accessing Genomics England’s data”.249 AstraZeneca complained that the ‘embassy system’, in which data can be accessed but not downloaded or copied from the central database, “brings challenges when integrating with other data sources outside the [Genomics England] platform”.250

87.The GENE Consortium has recently been replaced by the Discovery Forum. Like its predecessor, it does “not sell participants’ genomes or their medical data”,251 but provides a secure data centre for use by academic and industrial researchers.252 The Minister explained that companies will pay to access data, and that they will only be able to extract their analysis from the database, not the data itself.253 He told us that NHS England would initially look to recoup the operating costs of the data storage system, but he believed that in the longer term, it should look to capture the commercial value of its data, subject to restrictions for protecting patients.254

88.The Minister highlighted businesses that had been spun out of teaching hospitals as one way for the NHS to capture some of the commercial value from precision medicine.255 Professor Bell’s Life Sciences Industrial Strategy argued that genomics should play a part of the Government’s Industrial Strategy:

The ambition for genomics in the [Industrial] Strategy must be to maintain the UK’s globally leading position and to invest alongside industry to ensure that these genomic datasets are used to improve the discovery and targeting of therapies and to ensure that patients obtain more precise and useful diagnostic information in a range of disorders.256

The Life Sciences Industrial Strategy recommended the establishment of “a new regulatory Health Technology Assessment and commercial framework […] to capture for the UK the value in algorithms generated using NHS data”, and the creation of “a forum for early engagement between industry, NHS and arm’s-length bodies (e.g. NICE, MHRA) to agree commercial access agreements”.257

89.In response, the Government’s Life Sciences Sector Deal stated that “organisations including GSK and AstraZeneca will work in partnership with the Government to contribute to the whole genome sequencing of the UK Biobank”.258 Genomics England explained that it is working to add data collected by the NHS and through the UK Biobank and other projects to its dataset, and that it would provide “a single portal through which companies and collaborators can gain access to anonymised whole genome sequence and associated clinical and phenotype data; and deliver access that ensures strict compliance with the consents appropriate to each data source”.259

90.The data collected by the 100,000 Genomes Project, the Genomic Medicine Service and the wider NHS will constitute the best data resource for genomic medicine in the world. The NHS could benefit greatly from the realisation of the commercial value of the data that are being generated.

91.The Government must be ambitious in aiming to capture the full commercial value of the genomic and associated datasets it holds, rather than merely aiming to cover its costs. Genomics England should seek to maximise the commercial value of its datasets and continue to provide industrial and academic access to these data to facilitate the growth of the UK genomics industry and the development of new treatments, while ensuring consent and data safety safeguards. Genomics England should explore technological and commercial mechanisms to enable better integration of genomics data held inside their portal with other NHS data and data owned by private companies. While patient benefit should be the focus of the Genomic Medicine Service, income generated from NHS data can be reinvested in the NHS and further benefit patients in the long-term.

172The NHS Constitution’, NHS (2015)

173Review of Data Security, Consent and Opt-Outs’, National Data Guardian for Health and Care (2016)

174Your Data: Better Security, Better Choice, Better Care’, Department of Health (2017)

176 Genomics England (GNH0018)

177 Science and Technology Committee, Sixteenth Report of Session 2016–17, ‘Genomics and genome-editing: future lines of inquiry’, HC 854

178 National Data Guardian for Health and Care (GEN0026)

179 Written evidence to our predecessor Committee stated that “The Government initially claimed that ‘genomic data files from the 100,000 Genome Project to which academics, researchers and industry members will have access will be anonymous’. Freedom of Information requests revealed, however, that the Government’s claims were misleading [...] It transpired that all data used in the Genome Project is in fact pseudonymised: as such, public understanding of the level of access that is afforded to private sector actors in the 100,000 Genome Project was distorted.” (EthicsAndGenetics (GEN0010))

180The 100,000 Genomes Project Protocol’, Genomics England (2017)

181 Oral evidence taken on 8 February 2017, HC (2016–17) 854, Q53

182 Oral evidence taken on 8 February 2017, HC (2016–17) 854, Q53

183 Data Protection Bill [Lords], Schedule 171 [Bill 153 (2017–19)]

184 Genomics England, ‘Participant Information Sheets and Consent Forms’, accessed 2 February 2018

185 Genomics England, ‘Participant Information Sheets and Consent Forms’, accessed 2 February 2018

186 Oral evidence taken on 8 February 2017, HC (2016–17) 854, Q53

187 Oral evidence taken on 8 March 2017, HC (2016–17) 854, Q110

188 Genomics England (GNH0018)

189 PHG Foundation (GNH0015)

190 Qq149–150

191 Q141

192 Oral evidence taken on 8 February 2017, HC (2016–17) 854, Q105

194 Q214

195Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

197 Q142; Genetic Alliance UK (GNH0022)

198Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017); The report refers to this ‘social contract’ as a “common set of principles and values that bind together patients, the public and [NHS] staff in order to ensure that [the NHS] can be effective and equitable”, as laid out in the NHS Constitution, with each party having rights and responsibilities.

199Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

200 Qq214–215

201 Q216

202 Q213

203Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

204 Genomics England (GNH0018)

205 Q209

206 Q207; Q128

207 Q143

208 Middleton A. Socialising the genome: making genomics resonate. F1000Research 2018, 7:149 (doi: 10.7490/f1000research.1115249.1)

209The Genomics Conversation – An Overview’, Genomics England (2016)

210 Q209

211Review of Data Security, Consent and Opt-Outs’, National Data Guardian for Health and Care (2016); HC Deb, 6 July 2016, col 24WS

212 Q207

213 Q209

214 The Genomics Conversation - An Overview’, Genomics England (2016)

215The NHS Constitution’, NHS (2015)

216 A predictive genetic test is one taken prior to the appearance of any symptoms, signs or abnormal non-genetic tests results which indicate that the condition in question is present.

217 Association of British Insurers (GNH0039)

218Concordat and Moratorium on Genetics and Insurance’, HM Government and Association of British Insurers (2014)

219 Genomics England, ‘Insurance’, accessed 7 February 2018

220 Genomics England, ‘Insurance’, accessed 7 February 2018

221Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

222 Association of British Insurers (GNH0039)

223 Q218

224Concordat and Moratorium on Genetics and Insurance’, HM Government and Association of British Insurers (2014)

225 Association of British Insurers (GNH0039)

226 Association of British Insurers (GNH0039)

227 Association of British Insurers (GNH0039)

228 The Swiss Parliament’s Science, Education and Culture Committee recommended lifting existing restrictions on using genetic test results for insurance purposes, whereas the Federal Council proposed maintaining the current financial limits (comparable to the terms of the UK Concordat): ‘La loi fédérale sur l’analyse génétique humaine (LAGH) est prête pour l’examen au Conseil national’, Commission de la science, de l’éducation et de la culture, Press notice, 2 February 2018; ‘Message concernant la loi fédérale sur l’analyse génétique humaine’, Swiss Federal Council, 5 July 2017

229Seeing the future? How genetic testing will impact life insurance’, Swiss Re (2016); The list included Austria, Belgium, Denmark, France, Germany, the Netherlands, Norway, Poland, Portugal, Switzerland and some states in the USA.

230An Act to prohibit and prevent genetic discrimination’, Bill S-201, Parliament of Canada (2017)

231Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

232Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

234Generation Genome’, Annual Report of the Chief Medical Officer 2016 (2017)

235 Genomics England (GNH0018)

237 Genomics England (GNH0018)

238 Q24

239 Q17

240 Q26

242 Oral evidence taken on 14 November 2017, HC (2017–19) 351, Q15

243 Qq46–47

244 Genomics England, ‘FAQs about how we are working with industry’, accessed 1 December 2017

245 Q29

246 Genomics England, ‘FAQs about how we are working with industry’, accessed 1 December 2017

248 Association of the British Pharmaceutical Industry (GEN0040)

249 Wellcome Trust Sanger Institute (GEN0024)

250 AstraZeneca (GEN0056)

251 Genomics England, ‘FAQs about how we are working with industry’, accessed 1 December 2017

252 Department of Health (GEN0059)

253 Q221

254 Qq222–225

255 Q225

258Industrial Strategy: Life Sciences Sector Deal’, HM Government (2017); The UK Biobank is a health resource following the health and well-being of 500,000 participants and providing their anonymised health information to academic and industrial researchers in the UK and overseas.

259 Genomics England (GNH0018)

Published: 20 April 2018