Show Search Form

Search Results

registered interest	true false
date	exactly: or between: and
answering body
answering dept id
answering dept short name
answering dept sort name
hansard heading
house id
legislature	pref label
question text
tabling member constituency
tabling member printed
uin
answer	is ministerial correction true false date of answer exactly: or between: and answer text answering member constituency answering member printed grouped question UIN question first answered answering member label attachment file name title
tabling member	label

Search

1642404

registered interest
date	06/06/2023
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	2
legislature	25277 pref label House of Lords
question text	To ask His Majesty's Government, further to the Written Answer by Earl Howe on 15 July 2013 (HL1303), what progress the Human and Embryology Authority is able to report that may correspond to previous estimates that mitochondria replacement techniques could "save the lives of up to 10 babies who are born every year with a severe form of the disease, such as those with high levels of mutations".
tabling member printed	Lord Alton of Liverpool
uin	HL8241
answer	answer is ministerial correction date of answer 14/06/2023 answer text <p>The Human Fertilisation and Embryology Authority has advised that it has made no assessment of the estimates previously made by the Wellcome Trust Centre for Mitochondrial Research at Newcastle University, as the number of treatments to date in the United Kingdom is so low.</p> answering member printed Lord Markham question first answered 14/06/2023 13:40:46 answering member 4948 label Biography information for Lord Markham
tabling member	738 label Biography information for Lord Alton of Liverpool

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

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

177189

registered interest
date	02/02/2015
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 steps his Department has taken to help early diagnosis of very long-chain acyl-CoA dehydrogenase deficiency.
tabling member constituency	Harlow
tabling member printed	Robert Halfon
uin	222853
answer	answer is ministerial correction date of answer 09/02/2015 answer text <p>The UK National Screening Committee (UK NSC) advises Ministers and the National Health Service in all four countries about all aspects of screening policy and supports implementation.</p><p> </p><p> </p><p> </p><p>The UK NSC is currently reviewing newborn screening for very long chain acyl CoA dehydrogenase deficiency (VLCADD) against its internationally recognised criteria. A public consultation on the screening review opened on 21 November 2014 and will close on 23 February 2015. A copy of the consultation is available at:</p><p> </p><p> </p><p> </p><p><a href="http://www.screening.nhs.uk/fattyacidoxidation" target="_blank">http://www.screening.nhs.uk/fattyacidoxidation</a></p><p> </p><p> </p><p> </p><p>Improving education and awareness of rare diseases across the healthcare professions, including VLCADD, is a commitment in the UK Strategy for Rare Diseases. The Department continues to work closely with its delivery partners to implement the Strategy.</p><p> </p> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter question first answered 09/02/2015 15:58:41 answering member 3932 label Biography information for Dr Dan Poulter
tabling member	3985 label Biography information for Robert Halfon

99863

registered interest
date	20/10/2014
answering body	Cabinet Office
answering dept id	53
answering dept short name	Cabinet Office
answering dept sort name	Cabinet Office
hansard heading	Hereditary Diseases
house id	1
legislature	25259 pref label House of Commons
question text	To ask the Minister for the Cabinet Office, how many infant deaths were caused by MCAD deficiency in (a) East Lancashire, (b) the North West and (c) England in each of the last three years.
tabling member constituency	Pendle
tabling member printed	Andrew Stephenson
uin	211015
answer	answer is ministerial correction date of answer 23/10/2014 answer text <p>The information requested falls within the responsibility of the UK Statistics Authority. I have asked the Authority to reply.</p><p> </p> answering member constituency Reading East answering member printed Mr Rob Wilson question first answered 23/10/2014 15:48:38 answering member 1556 label Biography information for Mr Rob Wilson attachment 1 file name PQ 211015 ONS 359.pdf title ONS Letter to Member - Infant Deaths
tabling member	4044 label Biography information for Andrew Stephenson