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91630
star this property registered interest false more like this
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 remove filter
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 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 remove filter
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
177189
star this property registered interest false more like this
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 remove filter
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 more like this
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 remove filter
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 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 remove filter
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 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 remove filter
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
remove maximum value filtermore 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
65927
star this property registered interest false more like this
star this property date less than 2014-07-07more like thismore than 2014-07-07
star this property answering body
Department of Health more like this
star this property answering dept id 17 remove filter
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 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, further to the Written Answer by Earl Howe on 1 April (WA 178), whether they intend to issue a clarification of the differences between the figures for the number of babies born with mitochondrial disorders in their press releases on 28 June 2013 and 27 February 2014; whether the updated disease estimate for the United Kingdom based both on data from the 2011 census and observational epidemiological studies from the north-east of England is closer to their stated figure of one in 6,500 or one in 200; what was the corresponding frequency of children in either the north-east of England or the United Kingdom as a whole that were diagnosed with each of the mitochondrial diseases listed in Annex D of the consultation document entitled "Mitochondrial Donation" over the last ten years for which data are available; and how those figures compare to available data on population frequencies for mutations within the nuclear POLG1 and POLG2 genes. more like this
star this property tabling member printed
Lord Alton of Liverpool more like this
star this property uin HL854 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 2014-07-21more like thismore than 2014-07-21
star this property answer text <p>The Wellcome Centre for Mitochondrial Research at Newcastle University have estimated that there are initially 10-20 women per year, of child-bearing age, who carry faulty mitochondrial DNA (mtDNA) and who might decide that mitochondrial donation is the best reproductive option, as noted in my Written Answer of 1 April 2014.</p><p> </p><p>It is estimated that at least 1 in 200 children in the United Kingdom are born with faulty mtDNA, as stated in the consultation documentation released 27 February 2014. Whereas the figure of 1 in 6,500 babies, as stated in the press release of 28 June 2013, is an estimation of those thought to go on to develop a more serious mitochondrial disorder. Serious cases can result in fatal liver failure, stroke-like episodes, blindness, muscle disease, diabetes and deafness.</p><p> </p><p>Calculating the overall incidence of mitochondrial disease is extremely difficult. The figure of 1 in 200 is based on epidemiological data from the UK and Australia. This disease estimate in the UK is based on observational epidemiological studies from the north east of England which are currently being updated using the data from the 2011 census.</p><p> </p><p>The table of disorders caused by unhealthy mtDNA attached as Annex D in the consultation document ‘Mitochondrial Donation’ was derived from existing published tables, such as the 2011 report by the Expert Panel convened by The Human Fertilisation and Embryology Authority to review safety and efficacy of mitochondrial donation techniques. There is currently no published information of the exact numbers of cases of each of the conditions in Annex D.</p>
star this property answering member printed Earl Howe more like this
star this property question first answered
less than 2014-07-21T16:51:16.5940121Zmore like thismore than 2014-07-21T16:51:16.5940121Z
star this property answering member
2000
unstar this property label Biography information for Earl Howe more like this
star this property tabling member
738
unstar this property label Biography information for Lord Alton of Liverpool more like this