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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

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