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891534
star this property registered interest false remove filter
star this property date remove maximum value filtermore like thismore than 2018-04-25
star this property answering body
Department of Health and Social Care more like this
star this property answering dept id 17 more like this
unstar this property answering dept short name Health and Social Care more like this
star this property answering dept sort name Health and Social Care more like this
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 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. more like this
star this property tabling member constituency Bristol North West more like this
star this property tabling member printed
Darren Jones more like this
star this property uin 138095 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 2018-04-30more like thismore than 2018-04-30
star this property 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> more like this
star this property answering member constituency Gosport more like this
star this property answering member printed Caroline Dinenage more like this
star this property question first answered
less than 2018-04-30T15:41:08.457Zmore like thismore than 2018-04-30T15:41:08.457Z
star this property answering member
4008
unstar this property label Biography information for Caroline Dinenage more like this
star this property tabling member
4621
unstar this property label Biography information for Darren Jones more like this
91630
star this property registered interest false remove filter
star this property date less than 2014-09-11more like thismore than 2014-09-11
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 more like this
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 the Government response to the consultation on draft regulations to permit the use of new treatment techniques to prevent the transmission of a serious mitochondrial disease from mother to child, published in July 2014, whether his Department consulted (a) Dr Andy Greenfield, (b) Professor Peter Braude and (c) Professor Robin Lovell-Badge on the formulation of the statement on page 15 that (i) mitochondrial donation techniques do not alter personal characteristics and traits of the person and (ii) the proposed mitochondrial donation techniques do not constitute genetic modification. 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 209135 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 2014-10-13more like thismore than 2014-10-13
star this property answer text <p>The Government’s position that mitochondrial donation techniques do not alter personal characteristics and traits of the person reflects information within the April 2011 scientific report of the Human Fertilisation and Embryology Authority convened Expert Panel. The Expert Panel membership at that time included Professor Peter Braude and Professor Robin Lovell-Badge.</p><p> </p><p> </p><p> </p><p>The working definition of genetic modification in humans, in relation to mitochondrial donation, was determined by the Department in consultation with the Chief Medical Officer for England.</p><p> </p> more like this
star this property answering member constituency Mid Norfolk more like this
star this property answering member printed George Freeman more like this
star this property question first answered
less than 2014-10-13T14:19:49.5212012Zmore like thismore than 2014-10-13T14:19:49.5212012Z
star this property answering member
4020
unstar this property label Biography information for George Freeman more like this
star this property tabling member
1569
unstar this property label Biography information for Robert Flello more like this
179004
star this property registered interest false remove filter
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 more like this
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 remove filter
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 more like this
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
177189
star this property registered interest false remove filter
star this property date less than 2015-02-02more like thismore than 2015-02-02
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 more like this
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 steps his Department has taken to help early diagnosis of very long-chain acyl-CoA dehydrogenase deficiency. more like this
star this property tabling member constituency Harlow more like this
star this property tabling member printed
Robert Halfon more like this
star this property uin 222853 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 2015-02-09more like thismore than 2015-02-09
star this property 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> 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 2015-02-09T15:58:41.897Zmore like thismore than 2015-02-09T15:58:41.897Z
star this property answering member
3932
unstar this property label Biography information for Dr Dan Poulter more like this
star this property tabling member
3985
unstar this property label Biography information for Robert Halfon more like this
171143
star this property registered interest false remove filter
star this property date less than 2014-12-17more like thismore than 2014-12-17
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 more like this
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 steps he is taking to raise awareness of very long chain acyl-CoA dehydrogenase deficiency among (a) practitioners and (b) the public. more like this
star this property tabling member constituency Barnsley Central more like this
star this property tabling member printed
Dan Jarvis more like this
star this property uin 219149 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 2015-01-05more like thismore than 2015-01-05
star this property answer text <p>Raising awareness of all rare diseases amongst practitioners and the public, including very long chain acyl-CoA dehydrogenase deficiency, is a commitment in the UK Strategy for Rare Diseases. The Department continues to work closely with NHS England to implement this commitment.</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 2015-01-05T16:21:42.08Zmore like thismore than 2015-01-05T16:21:42.08Z
star this property answering member
3918
unstar this property label Biography information for Jane Ellison more like this
star this property tabling member
4243
unstar this property label Biography information for Dan Jarvis more like this
178544
star this property registered interest false remove filter
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 more like this
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 thismore than 2015-02-12T17:20:11.13Z
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 remove filter
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 more like this
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 remove filter
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 more like this
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
99863
star this property registered interest false remove filter
star this property date less than 2014-10-20more like thismore than 2014-10-20
star this property answering body
Cabinet Office more like this
star this property answering dept id 53 more like this
unstar this property answering dept short name Cabinet Office more like this
star this property answering dept sort name Cabinet Office more like this
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 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. more like this
star this property tabling member constituency Pendle more like this
star this property tabling member printed
Andrew Stephenson more like this
star this property uin 211015 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 2014-10-23more like thismore than 2014-10-23
star this property 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> more like this
star this property answering member constituency Reading East more like this
star this property answering member printed Mr Rob Wilson more like this
star this property question first answered
less than 2014-10-23T15:48:38.3349681Zmore like thismore than 2014-10-23T15:48:38.3349681Z
star this property answering member
1556
unstar this property label Biography information for Mr Rob Wilson more like this
star this property attachment
1
star this property file name PQ 211015 ONS 359.pdf more like this
star this property title ONS Letter to Member - Infant Deaths more like this
star this property tabling member
4044
unstar this property label Biography information for Andrew Stephenson more like this