Asked by: Henry Smith (Conservative - Crawley)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, pursuant to the Answer of 26 February 2024 to Question 14260 on Genomics: China, whether the programme of work to assess risks from biological data will include a review of (a) BGI Group, (b) MGI Tech and (c) other companies linked to the Chinese state.
Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)
Through the delivery of our Biological Security Strategy, the Government is committed ensuring the UK is resilient to a spectrum of biological threats, as well as being a world leader in innovation. As part of this Strategy, the Government is undertaking a programme of work to assess how we can minimise the risks from biological data to protect our burgeoning bioeconomy and build confidence in sharing personal data to improve health outcomes in the UK and across the world. This review covers the extent to which the UK shares data with certain companies.
Currently, organisations which hold sensitive biological data are subject to the UK General Data Protection Regulation (GDPR). In addition, organisations such as Genomics England, UK Biobank and NIHR BioResource actively consider national security in decision making about partnerships with companies overseas. These organisations consult with security personnel on a regular basis to ensure partnerships are aligned with our national security interests.
Asked by: Henry Smith (Conservative - Crawley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to help improve genomics testing for bowel cancer patients.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
A National Health Service testing programme is helping to diagnose thousands of people with a genetic condition, Lynch Syndrome, that increases the chance of developing certain cancers including bowel cancer. The national programme ensures all people diagnosed with bowel cancer are offered genomic testing, with a diagnosis for Lynch Syndrome not only helping to guide more personalised cancer treatment but enabling their families and relatives to be offered testing too. Relatives who receive a diagnosis of Lynch Syndrome can be referred to genetic services to discuss regular testing options to help catch any cancers as early as possible, as well as to consider preventive options such as taking aspirin or undergoing risk-reducing surgery.
Genomic testing in the NHS in England is provided through the NHS Genomic Medicine Service (GMS) and delivered by a national genomic testing network of seven NHS Genomic Laboratory Hubs (GLHs). The NHS GLHs deliver testing as directed by the National Genomic Test Directory (NGTD) which outlines the full range of genomic testing offered by the NHS in England including tests for 3,200 rare diseases and over 200 cancer clinical indications, including both whole genome sequencing (WGS) and non-WGS testing. The NGTD sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested and the method that should be used, including testing for bowel cancer patients.
The NHS GMS cancer genomic testing strategy has facilitated a move to a consolidated laboratory network through the seven NHS GLHs delivering more extensive panel testing using cutting edge high throughput Next Generation Sequencing (NGS) technology. For patients, including those with bowel cancer, this technology enables testing for a larger number of genetic variations to give a more precise diagnosis, identify biomarkers to target treatment and opportunities to access innovative medicines, and can support enrolment into molecularly stratified clinical trials.
Testing is available for all eligible patients across the whole of England. Individuals should discuss with their healthcare professional (for example, their general practitioner or other healthcare professional if they are already being seen in a relevant service) whether genomic testing is appropriate for them. Their healthcare professional will then make a decision whether to refer the individual either directly or via an NHS clinical genomics service or other relevant clinical speciality for genomic testing following clinical review of their and their family’s medical history if known, and the relevant genomic testing eligibility criteria.
The 17 NHS Clinical Genomic Services (NHS CGSs), commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. As part of the NHS CGS, the patient and their family will access diagnosis, and management relevant to their particular condition, but also receive support and guidance so that they are able to understand their condition, its implications, and their options in relation to reproduction, screening, prevention and clinical management.
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to raise awareness of inherited cardiac conditions among GPs.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are not aware of plans to introduce a national leadership role for inherited cardiac conditions. However, NHS England, through the National Genomics Education Team, also deliver and advise on learning and development opportunities that prepare current and future National Health Service professionals to make the best use of genomics in their practice.
Furthermore, the National Genomic Test Directory sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing.
This includes the development of resources to support the workforce across the entire care continuum, for example, in the case of familial hypercholesterolaemia this would include the whole multi-professional team, inclusive of primary care. Furthermore, the Genomic Training
Academy will begin offering education and training through virtual and in person learning for the specialist genomics workforce, including laboratory and clinical staff.
NHS Clinical Genomic Services deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages including families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not have any direct plans to introduce self-referral forms for family members of people with genetic cardiac conditions.
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she plans to introduce self-referral forms for family members of people with genetic cardiac conditions.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are not aware of plans to introduce a national leadership role for inherited cardiac conditions. However, NHS England, through the National Genomics Education Team, also deliver and advise on learning and development opportunities that prepare current and future National Health Service professionals to make the best use of genomics in their practice.
Furthermore, the National Genomic Test Directory sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing.
This includes the development of resources to support the workforce across the entire care continuum, for example, in the case of familial hypercholesterolaemia this would include the whole multi-professional team, inclusive of primary care. Furthermore, the Genomic Training
Academy will begin offering education and training through virtual and in person learning for the specialist genomics workforce, including laboratory and clinical staff.
NHS Clinical Genomic Services deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages including families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not have any direct plans to introduce self-referral forms for family members of people with genetic cardiac conditions.
Asked by: Virendra Sharma (Labour - Ealing, Southall)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she plans to introduce a national leadership role for inherited cardiac conditions.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are not aware of plans to introduce a national leadership role for inherited cardiac conditions. However, NHS England, through the National Genomics Education Team, also deliver and advise on learning and development opportunities that prepare current and future National Health Service professionals to make the best use of genomics in their practice.
Furthermore, the National Genomic Test Directory sets out the eligibility criteria for patients to access testing as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing.
This includes the development of resources to support the workforce across the entire care continuum, for example, in the case of familial hypercholesterolaemia this would include the whole multi-professional team, inclusive of primary care. Furthermore, the Genomic Training
Academy will begin offering education and training through virtual and in person learning for the specialist genomics workforce, including laboratory and clinical staff.
NHS Clinical Genomic Services deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment and lifelong clinical management of patients of all ages including families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not have any direct plans to introduce self-referral forms for family members of people with genetic cardiac conditions.
Asked by: Catherine West (Labour - Hornsey and Wood Green)
Question to the Cabinet Office:
To ask the Minister for the Cabinet Office, whether the Government (a) is taking steps to ensure the security of genetic data of UK citizens and (b) has raised potential concerns relating to Chinese genomics companies as part of the US-UK Strategic Dialogue on Biological Security.
Answered by Alex Burghart - Parliamentary Secretary (Cabinet Office)
Organisations which hold sensitive biological data are subject to the UK General Data Protection Regulation (GDPR). In addition, organisations such as Genomics England, UK Biobank and NIHR BioResource consider national security in decision making about partnerships with other companies.
The Office for Life Sciences is undertaking a programme of work to assess how we can minimise the risks from biological data to protect our burgeoning bioeconomy, without stifling innovation, and build confidence in sharing personal data to improve health outcomes in the UK and across the world. This is being conducted in consultation with relevant Departments and Agencies across Government, and key partners such as Genomics England and UK Biobank.
Underpinned by the UK Biological Security Strategy and the U.S. Biodefense Strategy, the U.S.-UK Strategic Dialogue on Biological Security reflects a shared ambition to protect against a growing and diverse spectrum of biological threats. These risks include future pandemics as well as those that might arise from misuse of biotechnology and genomic data by state actors.
Asked by: Elliot Colburn (Conservative - Carshalton and Wallington)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will make an assessment of the implications for her policies of variations in access to genetic and genomic testing for cancer through the NHS Genomics Medicine Service; and what steps her Department is taking to reduce these variations.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The seven NHS Genomic Medicine Service Alliances raise awareness of genomics among healthcare professionals and support delivery of equitable access to genomic testing, clinical genetics, and genomic counselling services. NHS England has also established the NHS Genomics Ethics, Equity and Legal Advisory Group to ensure that the NHS Genomic Medicine Service (NHS GMS) provides equitable access to all patients. The group will identify and review appropriate datasets to inform health inequalities analysis of the NHS GMS, and identify actions to address inequalities.
Asked by: Alexander Stafford (Conservative - Rother Valley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what information her Department holds on the number of people with Charcot-Marie-Tooth disease in (a) Rother Valley constituency and (b) England.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases, such as Charcot-Marie-Tooth disease. The framework lists the following four priorities, collaboratively developed with the rare disease community: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatments and drugs.
To support with training for and awareness of rare diseases, National Genomics Education has developed a range of resources, including GeNotes. GeNotes puts innovative educational resources on genomics and rare diseases at the fingertips of healthcare professionals and includes information on Charcot-Marie-Tooth disease, which supports healthcare professionals to identify and manage this condition.
Asked by: Lisa Nandy (Labour - Wigan)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to improve the (a) diagnosis and (b) treatment of X-linked hypophosphatemia.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Genomic testing in the National Health Service in England for hypophosphataemia is currently included in the National Genomic Test Directory under the clinical indication labelled R154. X-linked hypophosphatemia is one of 200 treatable rare conditions being included in the Generation Study, a landmark research study which will sequence the whole genomes of 100,000 newborn babies being led by Genomics England in partnership with the NHS.
The study will evaluate the utility and feasibility of using whole genome sequencing to screen newborn babies for a larger number of childhood-onset rare genetic conditions in the NHS, with a decision whether this should be rolled out now or in the future based on the relevant evidence.
National Genomics Education has also developed GeNotes, which puts innovative educational resources on genomics and rare diseases at the fingertips of healthcare professionals. GeNotes includes information on hypophosphatemia to support healthcare professionals to identify and manage forms of hypophosphatemia such as X-linked hypophosphatemia.
Burosumab is now recommended and available on the NHS for treating X-linked hypophosphataemia in children and young people who are still growing. This novel treatment addresses the underlying problem, rather than compensating for phosphate loss, so is effective in helping children to grow normally.
Asked by: Henry Smith (Conservative - Crawley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether she is taking steps to protect (a) Bupa, (b) HCA Healthcare and (c) other major private healthcare providers from (i) BGI Group and (ii) MGI Tech.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Organisations which hold sensitive biological data are subject to the UK General Data Protection Regulation (GDPR). In addition, organisations such as Genomics England, UK Biobank and NIHR BioResource actively consider national security in decision making about partnerships with companies overseas.
As part of the new UK Biological Security Strategy, the Government is undertaking a programme of work to assess how we can minimise the risks from biological data to protect our burgeoning bioeconomy, without stifling innovation, and build confidence in sharing personal data to improve health outcomes in the United Kingdom and across the world. The Office for Life Sciences has begun this work, in consultation with relevant Departments and Agencies across Government, and key partners such as Genomics England and UK Biobank.