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179004
star this property registered interest false more like this
star this property date less than 2015-02-10more like thismore than 2015-02-10
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property 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. more like this
star this property tabling member constituency Stoke-on-Trent South more like this
star this property tabling member printed
Robert Flello more like this
star this property uin 224080 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-02-23more like thismore than 2015-02-23
star this property 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> more like this
star this property answering member constituency Battersea more like this
star this property answering member printed Jane Ellison more like this
star this property question first answered
less than 2015-02-23T16:05:17.44Zmore like thismore than 2015-02-23T16:05:17.44Z
star this property answering member
3918
unstar this property label Biography information for Jane Ellison more like this
star this property tabling member
1569
unstar this property label Biography information for Robert Flello more like this
686170
star this property registered interest false more like this
star this property date less than 2017-02-07more like thismore than 2017-02-07
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property 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. more like this
star this property tabling member constituency Congleton more like this
star this property tabling member printed
Fiona Bruce more like this
star this property uin 63365 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2017-02-10more like thismore than 2017-02-10
star this property 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>
star this property answering member constituency Oxford West and Abingdon more like this
star this property answering member printed Nicola Blackwood more like this
star this property grouped question UIN 63363 more like this
star this property question first answered
less than 2017-02-10T09:50:02.133Zmore like thismore than 2017-02-10T09:50:02.133Z
star this property answering member
4019
unstar this property label Biography information for Baroness Blackwood of North Oxford more like this
star this property tabling member
3958
unstar this property label Biography information for Fiona Bruce more like this
178544
star this property registered interest false more like this
star this property date less than 2015-02-09more like thismore than 2015-02-09
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property 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. more like this
star this property tabling member constituency North Tyneside more like this
star this property tabling member printed
Mrs Mary Glindon more like this
star this property uin 223866 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-02-12more like thismore than 2015-02-12
star this property 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> more like this
star this property answering member constituency Battersea more like this
star this property answering member printed Jane Ellison more like this
star this property question first answered
less than 2015-02-12T17:20:11.13Zmore like thisremove minimum value filter
star this property answering member
3918
unstar this property label Biography information for Jane Ellison more like this
star this property tabling member
4126
unstar this property label Biography information for Mary Glindon more like this
223632
star this property registered interest false more like this
star this property date less than 2015-02-25more like thismore than 2015-02-25
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property 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. more like this
star this property tabling member constituency Shipley more like this
star this property tabling member printed
Philip Davies more like this
star this property uin 225464 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-03-03more like thismore than 2015-03-03
star this property 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>
star this property answering member constituency Central Suffolk and North Ipswich more like this
star this property answering member printed Dr Daniel Poulter more like this
star this property question first answered
less than 2015-03-03T10:37:42.26Zmore like thismore than 2015-03-03T10:37:42.26Z
star this property answering member
3932
unstar this property label Biography information for Dr Dan Poulter more like this
star this property tabling member
1565
unstar this property label Biography information for Philip Davies more like this
224726
star this property registered interest false more like this
star this property date less than 2015-03-03more like thismore than 2015-03-03
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 1 more like this
star this property legislature
25259
star this property pref label House of Commons more like this
star this property 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. more like this
star this property tabling member constituency Shipley more like this
star this property tabling member printed
Philip Davies more like this
star this property uin 226013 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-03-10more like thismore than 2015-03-10
star this property 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> more like this
star this property answering member constituency Central Suffolk and North Ipswich more like this
star this property answering member printed Dr Daniel Poulter more like this
star this property question first answered
less than 2015-03-10T17:23:17.223Zmore like thismore than 2015-03-10T17:23:17.223Z
star this property answering member
3932
unstar this property label Biography information for Dr Dan Poulter more like this
star this property tabling member
1565
unstar this property label Biography information for Philip Davies more like this
228709
star this property registered interest false more like this
star this property date less than 2015-03-19more like thismore than 2015-03-19
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 2 more like this
star this property legislature
25277
star this property pref label House of Lords more like this
star this property 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. more like this
star this property tabling member printed
Baroness Deech more like this
star this property uin HL5891 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-03-25more like thismore than 2015-03-25
star this property 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>
star this property answering member printed Earl Howe more like this
star this property grouped question UIN
HL5892 more like this
HL5893 more like this
HL5894 more like this
star this property question first answered
less than 2015-03-25T14:05:28.233Zmore like thismore than 2015-03-25T14:05:28.233Z
star this property answering member
2000
unstar this property label Biography information for Earl Howe more like this
star this property tabling member
3756
unstar this property label Biography information for Baroness Deech more like this
228712
star this property registered interest false more like this
star this property date less than 2015-03-19more like thismore than 2015-03-19
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 2 more like this
star this property legislature
25277
star this property pref label House of Lords more like this
star this property 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. more like this
star this property tabling member printed
Baroness Deech more like this
star this property uin HL5894 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-03-25more like thismore than 2015-03-25
star this property 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>
star this property answering member printed Earl Howe more like this
star this property grouped question UIN
HL5891 more like this
HL5892 more like this
HL5893 more like this
star this property question first answered
less than 2015-03-25T14:05:28.627Zmore like thismore than 2015-03-25T14:05:28.627Z
star this property answering member
2000
unstar this property label Biography information for Earl Howe more like this
star this property tabling member
3756
unstar this property label Biography information for Baroness Deech more like this
228711
star this property registered interest false more like this
star this property date less than 2015-03-19more like thismore than 2015-03-19
star this property answering body
Department of Health more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health more like this
star this property answering dept sort name Health remove filter
star this property hansard heading Hereditary Diseases remove filter
star this property house id 2 more like this
star this property legislature
25277
star this property pref label House of Lords more like this
star this property 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. more like this
star this property tabling member printed
Baroness Deech more like this
star this property uin HL5893 more like this
star this property answer
answer
star this property is ministerial correction false more like this
star this property date of answer less than 2015-03-25more like thismore than 2015-03-25
star this property 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>
star this property answering member printed Earl Howe more like this
star this property grouped question UIN
HL5891 more like this
HL5892 more like this
HL5894 more like this
star this property question first answered
less than 2015-03-25T14:05:28.52Zmore like thismore than 2015-03-25T14:05:28.52Z
star this property answering member
2000
unstar this property label Biography information for Earl Howe more like this
star this property tabling member
3756
unstar this property label Biography information for Baroness Deech more like this