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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

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

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

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

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