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91630

	registered interest
	date	11/09/2014
	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, 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.
	tabling member constituency	Stoke-on-Trent South
	tabling member printed	Robert Flello
	uin	209135
	answer	answer is ministerial correction date of answer 13/10/2014 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> answering member constituency Mid Norfolk answering member printed George Freeman question first answered 13/10/2014 14:19:49 answering member 4020 label Biography information for George Freeman
	tabling member	1569 label Biography information for Robert Flello

179004

	registered interest
	date	10/02/2015
	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, 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.
	tabling member constituency	Stoke-on-Trent South
	tabling member printed	Robert Flello
	uin	224080
	answer	answer is ministerial correction date of answer 23/02/2015 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> answering member constituency Battersea answering member printed Jane Ellison question first answered 23/02/2015 16:05:17 answering member 3918 label Biography information for Jane Ellison
	tabling member	1569 label Biography information for Robert Flello

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

177189

	registered interest
	date	02/02/2015
	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, what steps his Department has taken to help early diagnosis of very long-chain acyl-CoA dehydrogenase deficiency.
	tabling member constituency	Harlow
	tabling member printed	Robert Halfon
	uin	222853
	answer	answer is ministerial correction date of answer 09/02/2015 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> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter question first answered 09/02/2015 15:58:41 answering member 3932 label Biography information for Dr Dan Poulter
	tabling member	3985 label Biography information for Robert Halfon

171143

	registered interest
	date	17/12/2014
	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, what steps he is taking to raise awareness of very long chain acyl-CoA dehydrogenase deficiency among (a) practitioners and (b) the public.
	tabling member constituency	Barnsley Central
	tabling member printed	Dan Jarvis
	uin	219149
	answer	answer is ministerial correction date of answer 05/01/2015 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> answering member constituency Battersea answering member printed Jane Ellison question first answered 05/01/2015 16:21:42 answering member 3918 label Biography information for Jane Ellison
	tabling member	4243 label Biography information for Dan Jarvis

178544

	registered interest
	date	09/02/2015
	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, 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.
	tabling member constituency	North Tyneside
	tabling member printed	Mrs Mary Glindon
	uin	223866
	answer	answer is ministerial correction date of answer 12/02/2015 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> answering member constituency Battersea answering member printed Jane Ellison question first answered 12/02/2015 17:20:11 answering member 3918 label Biography information for Jane Ellison
	tabling member	4126 label Biography information for Mary Glindon

223632

	registered interest
	date	25/02/2015
	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, what assessment his Department has made of the health effects of consanguineous marriages; and what steps he is taking to reduce them.
	tabling member constituency	Shipley
	tabling member printed	Philip Davies
	uin	225464
	answer	answer is ministerial correction date of answer 03/03/2015 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> answering member constituency Central Suffolk and North Ipswich answering member printed Dr Daniel Poulter question first answered 03/03/2015 10:37:42 answering member 3932 label Biography information for Dr Dan Poulter
	tabling member	1565 label Biography information for Philip Davies

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 Philip Davies

99863

	registered interest
	date	20/10/2014
	answering body	Cabinet Office
	answering dept id	53
	answering dept short name	Cabinet Office
	answering dept sort name	Cabinet Office
	hansard heading	Hereditary Diseases
	house id	1
	legislature	25259 pref label House of Commons
	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.
	tabling member constituency	Pendle
	tabling member printed	Andrew Stephenson
	uin	211015
	answer	answer is ministerial correction date of answer 23/10/2014 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> answering member constituency Reading East answering member printed Mr Rob Wilson question first answered 23/10/2014 15:48:38 answering member 1556 label Biography information for Mr Rob Wilson attachment 1 file name PQ 211015 ONS 359.pdf title ONS Letter to Member - Infant Deaths
	tabling member	4044 label Biography information for Andrew Stephenson

65927

	registered interest
	date	07/07/2014
	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, 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.
	tabling member printed	Lord Alton of Liverpool
	uin	HL854
	answer	answer is ministerial correction date of answer 21/07/2014 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> answering member printed Earl Howe question first answered 21/07/2014 16:51:16 answering member 2000 label Biography information for Earl Howe
	tabling member	738 label Biography information for Lord Alton of Liverpool