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1190617

registered interest
date	27/04/2020
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health and Social Care, what recent progress his Department has made on research into the treatment of mitochondrial disease.
tabling member constituency	The Wrekin
tabling member printed	Mark Pritchard
uin	40538
answer	answer is ministerial correction date of answer 11/05/2020 answer text <p>The Department’s National Institute for Health Research (NIHR) supports three Biomedical Research Centres (BRC) and two Clinical Research Facilities that are carrying out research on mitochondrial disease. This includes a project from the NIHR BRC in Great Ormond Street on novel diagnostic and therapeutic approaches for mitochondrial disorders.</p><p>The NIHR welcomes funding applications for research into any aspect of human health, including mitochondrial disease; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 11/05/2020 12:03:24 answering member 4527 label Biography information for Helen Whately
tabling member	1576 label Biography information for Mark Pritchard

891534

registered interest
date	25/04/2018
answering body	Department of Health and Social Care
answering dept id	17
answering dept short name	Health and Social Care
answering dept sort name	Health and Social Care
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	to ask the Secretary of State for Health and Social Care, what lessons have been learned from the 100,000 Genome Project which will help when deciding what genetic diseases should be screened for at birth.
tabling member constituency	Bristol North West
tabling member printed	Darren Jones
uin	138095
answer	answer is ministerial correction date of answer 30/04/2018 answer text <p>The 100,000 Genomes Project is focussed on recruiting patients, including children, with rare diseases (and their family members) and those with common cancers. These are areas where whole genome sequencing may offer the best opportunity to diagnose disease. From the Project’s pilot phase we have found actionable findings in 20-25% of rare disease patients.</p><p> </p><p>The scope of the project does not include screening at birth. The Chief Medical Officer, in her annual report Generation Genome, recommended that that the National Screening Committee conducts a systematic evaluation of the opportunities offered by genomics for present and potential screening practices.</p> answering member constituency Gosport answering member printed Caroline Dinenage question first answered 30/04/2018 15:41:08 answering member 4008 label Biography information for Dame Caroline Dinenage
tabling member	4621 label Biography information for Darren Jones

686170

registered interest
date	07/02/2017
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, whether his Department funds alternative treatments for mitochondrial disorders that (a) can treat those born with mitochondrial disease and (b) do not involve the creation of genetically modified human embryos; and what plans he has to do so in the future.
tabling member constituency	Congleton
tabling member printed	Fiona Bruce
uin	63365
answer	answer is ministerial correction date of answer 10/02/2017 answer text <p>The Human Fertilisation and Embryology Authority decided on 15 December 2016 to allow the use mitochondrial donation for risk reduction treatments in certain cases where alternative treatments would be of little or no benefit to mothers at risk of passing mitochondrial disease onto their children. This decision was taken after considering the independent Expert Panel’s fourth report on the latest evidence of safety and efficacy and following a comprehensive and rigorous process of assessment and review of the scientific evidence over the last six years. Before any treatment is offered to affected families, there are still two more licencing processes to be completed. The first to ensure that the clinic meets the required suitability standards and the second a case by case assessment of each individual as required by the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015.</p><p> </p><p>NHS England is the designated commissioner of the National Health Service service for mitochondrial donation and will fund the treatment costs of the service, alongside an evaluative research project funded by the Wellcome Trust, which will assess and monitor follow-up and outcomes.</p><p> </p><p>Mitochondrial donation does not fit within the definition in law of a clinical trial for the purpose of compliance with the EU Clinical Trial Directive 2001/20/EC. The Directive relates to clinical trials of medicinal products governed by the medicines licensing regime set out in the Medicinal Products Directive and is part of a suite of European measures which set out common rules across the European Union to ensure the free movement of safe medicines.</p><p> </p><p>The Government does not agree with the characterisation of mitochondrial donation as a form of genetic modification. The mitochondrial donation techniques do not involve the germ-line modification of nuclear DNA in the chromosomes that can be passed on to future generations, which is the Chief Medical Officer’s working definition of genetic modification in humans.</p><p> </p><p>NHS England nationally commissions the rare mitochondrial disease service for adults and children, which provides a comprehensive diagnostic service for patients suffering from mitochondrial disease.</p> answering member constituency Oxford West and Abingdon answering member printed Nicola Blackwood grouped question UIN 63363 question first answered 10/02/2017 09:50:02 answering member 4019 label Biography information for Baroness Blackwood of North Oxford
tabling member	3958 label Biography information for Fiona Bruce

228709

registered interest
date	19/03/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government which organisation or body is responsible for assessing the needs of the local population for carrier screening for genetic disorders in at risk populations without an established family history.
tabling member printed	Baroness Deech
uin	HL5891
answer	answer is ministerial correction date of answer 25/03/2015 answer text <p>The UK National Screening Committee makes recommendations on whole population screening programmes. It is for the National Institute for Health and Care Excellence or its accredited guideline producing bodies to recommend care and testing of people at high risk.</p><p> </p><p> </p><p> </p><p>NHS England has commissioning arrangements in place for carrier testing for Tay Sachs disease for at risk populations. Genetic testing will be undertaken where there is a known family history, which indicates a risk of the specific condition or in response to the individual’s clinical symptoms. In the absence of a family history or clinical symptoms it is the responsibility of clinical commissioning groups based on their local needs as to whether they fund referrals to clinical genetics for carrier screening for Tay Sachs disease.</p><p> </p><p> </p><p> </p><p>Genomics offers a great opportunity to improve our insight into genetic diseases. It is for this reason that the Government launched a world-leading project to sequence 100,000 genomes from National Health Service patients and established Genomics England, a subsidiary of the Department, to deliver the project.</p><p> </p> answering member printed Earl Howe grouped question UIN HL5892 HL5893 HL5894 question first answered 25/03/2015 14:05:28 answering member 2000 label Biography information for Earl Howe
tabling member	3756 label Biography information for Baroness Deech

228711

registered interest
date	19/03/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government which government department or organisation or body in the National Health Service is currently responsible for setting or determining the national policy for carrier screening for (1) Tay Sachs disease, (2) Familial Dysautonomia and Canavan disease, and (3) other severe inherited genetic disorders, in at risk populations without an established family history.
tabling member printed	Baroness Deech
uin	HL5893
answer	answer is ministerial correction date of answer 25/03/2015 answer text <p>The UK National Screening Committee makes recommendations on whole population screening programmes. It is for the National Institute for Health and Care Excellence or its accredited guideline producing bodies to recommend care and testing of people at high risk.</p><p> </p><p> </p><p> </p><p>NHS England has commissioning arrangements in place for carrier testing for Tay Sachs disease for at risk populations. Genetic testing will be undertaken where there is a known family history, which indicates a risk of the specific condition or in response to the individual’s clinical symptoms. In the absence of a family history or clinical symptoms it is the responsibility of clinical commissioning groups based on their local needs as to whether they fund referrals to clinical genetics for carrier screening for Tay Sachs disease.</p><p> </p><p> </p><p> </p><p>Genomics offers a great opportunity to improve our insight into genetic diseases. It is for this reason that the Government launched a world-leading project to sequence 100,000 genomes from National Health Service patients and established Genomics England, a subsidiary of the Department, to deliver the project.</p><p> </p> answering member printed Earl Howe grouped question UIN HL5891 HL5892 HL5894 question first answered 25/03/2015 14:05:28 answering member 2000 label Biography information for Earl Howe
tabling member	3756 label Biography information for Baroness Deech

228712

registered interest
date	19/03/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	2
legislature	25277 pref label House of Lords
question text	To ask Her Majesty’s Government which government department, NHS organisation or body is currently responsible for commissioning carrier screening services for (1) Tay Sachs disease, (2) Familial Dysautonomia and Canavan disease, and (3) other severe inherited genetic disorders, in at risk populations without an established family history.
tabling member printed	Baroness Deech
uin	HL5894
answer	answer is ministerial correction date of answer 25/03/2015 answer text <p>The UK National Screening Committee makes recommendations on whole population screening programmes. It is for the National Institute for Health and Care Excellence or its accredited guideline producing bodies to recommend care and testing of people at high risk.</p><p> </p><p> </p><p> </p><p>NHS England has commissioning arrangements in place for carrier testing for Tay Sachs disease for at risk populations. Genetic testing will be undertaken where there is a known family history, which indicates a risk of the specific condition or in response to the individual’s clinical symptoms. In the absence of a family history or clinical symptoms it is the responsibility of clinical commissioning groups based on their local needs as to whether they fund referrals to clinical genetics for carrier screening for Tay Sachs disease.</p><p> </p><p> </p><p> </p><p>Genomics offers a great opportunity to improve our insight into genetic diseases. It is for this reason that the Government launched a world-leading project to sequence 100,000 genomes from National Health Service patients and established Genomics England, a subsidiary of the Department, to deliver the project.</p><p> </p> answering member printed Earl Howe grouped question UIN HL5891 HL5892 HL5893 question first answered 25/03/2015 14:05:28 answering member 2000 label Biography information for Earl Howe
tabling member	3756 label Biography information for Baroness Deech

224726

registered interest
date	03/03/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, pursuant to the Answer of 3 March 2015 to Question 225464, if he will estimate the annual cost to the NHS of the implications of genetic inheritance birth defects.
tabling member constituency	Shipley
tabling member printed	Philip Davies
uin	226013
answer	answer is ministerial correction date of answer 10/03/2015 answer text <p>There has been no assessment made of the annual cost to the National Health Service of the implications of genetic inheritance birth defects.</p><p> </p><p><strong> </strong></p><p> </p> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter question first answered 10/03/2015 17:23:17 answering member 3932 label Biography information for Dr Dan Poulter
tabling member	1565 label Biography information for Sir Philip Davies

223632

registered interest
date	25/02/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what assessment his Department has made of the health effects of consanguineous marriages; and what steps he is taking to reduce them.
tabling member constituency	Shipley
tabling member printed	Philip Davies
uin	225464
answer	answer is ministerial correction date of answer 03/03/2015 answer text <p>The NHS Born in Bradford study found that although most babies born to a couple who are related do not have a genetic problem, consanguineous marriage can increase the risk of birth defect from 3% to 6%. Further information is available on the Born in Bradford website at:</p><p> </p><p> </p><p> </p><p><a href="http://www.borninbradford.nhs.uk/parentstudies/130/StudyDetails/studies-into-the-impact-of-congenital-anomalies-on-health/" target="_blank">http://www.borninbradford.nhs.uk/parentstudies/130/StudyDetails/studies-into-the-impact-of-congenital-anomalies-on-health/</a></p><p> </p><p> </p><p> </p><p>It is important that antenatal, paediatric and genetic services work with communities to improve awareness of the risk of consanguineous marriage. Local commissioners are best placed to determine whether action is needed in their area. To support clinical commissioning groups (CCGs), NHS England published in February 2014, <em>Our Ambition to Reduce Premature Mortality: A resource to support commissioners in setting a level of ambition</em>. In line with the document, CCGs may wish to consider investment in community-based health champions and communication campaigns aimed at raising awareness of the implications of genetic inheritance alongside community based access to genetic counselling and family planning services and enhanced diagnostic services.</p><p> </p><p> </p><p> </p><p>A copy of the resource document is available on the NHS England website at:</p><p> </p><p> </p><p> </p><p><a href="http://www.england.nhs.uk/wp-content/uploads/2014/03/mort-res-22-5.pdf" target="_blank">http://www.england.nhs.uk/wp-content/uploads/2014/03/mort-res-22-5.pdf</a></p><p> </p> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter question first answered 03/03/2015 10:37:42 answering member 3932 label Biography information for Dr Dan Poulter
tabling member	1565 label Biography information for Sir Philip Davies

179004

registered interest
date	10/02/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, with reference to Part 5 (a) (ii) of the Mitochndrial Donation Regulations 2015, how the Human Fertilisation and Embryology Authority plans to define a "significant risk" of having or developing serious mitochondrial disease.
tabling member constituency	Stoke-on-Trent South
tabling member printed	Robert Flello
uin	224080
answer	answer is ministerial correction date of answer 23/02/2015 answer text <p>The Human Fertilisation and Embryology Authority has advised that if Parliament passes the Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015, it will need to design a regulatory process of which the consideration of “significant risk” is a part. In designing that process it will take into account, where relevant, the existing regulatory process for embryo testing (preimplantation genetic diagnosis).</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 23/02/2015 16:05:17 answering member 3918 label Biography information for Jane Ellison
tabling member	1569 label Biography information for Robert Flello

178544

registered interest
date	09/02/2015
answering body	Department of Health
answering dept id	17
answering dept short name	Health
answering dept sort name	Health
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Secretary of State for Health, what estimate he has made of the cost to the public purse of (a) treatments for mitochondrial disease involving mitochondrial donation and (b) treatments for mitochondrial disease that do not involve mitochondrial donation in each of the next five financial years.
tabling member constituency	North Tyneside
tabling member printed	Mrs Mary Glindon
uin	223866
answer	answer is ministerial correction date of answer 12/02/2015 answer text <p>The Government’s analysis of estimated costs and benefits is contained in the Impact Assessment that was laid in Parliament, together with the Draft Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015, on 17 December 2014.</p><p> </p><p> </p><p> </p><p>The cost over 10 years was estimated at £11.1 million with the monetised benefit estimated at £329.2 million.</p><p> </p> answering member constituency Battersea answering member printed Jane Ellison question first answered 12/02/2015 17:20:11 answering member 3918 label Biography information for Jane Ellison
tabling member	4126 label Biography information for Mary Glindon