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891534
star this property registered interest false more like this
star this property date less than 2018-04-25more 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
star this property answering dept short name Health and Social Care more like this
unstar 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
unstar this property answer
answer
unstar 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
unstar this property answering member
4008
star 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
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
star this property answering dept short name Health more like this
unstar 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
unstar this property answer
answer
unstar 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
unstar this property answering member
4019
star 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