{ "format" : "linked-data-api", "version" : "0.2", "result" : {"_about" : "http://eldaddp.azurewebsites.net/answeredquestions.text?hansardHeading=Genetics%3A+Screening&max-answer.dateOfAnswer=2023-10-25", "definition" : "http://eldaddp.azurewebsites.net/meta/answeredquestions.text?hansardHeading=Genetics%3A+Screening&max-answer.dateOfAnswer=2023-10-25", "extendedMetadataVersion" : "http://eldaddp.azurewebsites.net/answeredquestions.text?_metadata=all&hansardHeading=Genetics%3A+Screening&max-answer.dateOfAnswer=2023-10-25", "first" : "http://eldaddp.azurewebsites.net/answeredquestions.text?_page=0&hansardHeading=Genetics%3A+Screening&max-answer.dateOfAnswer=2023-10-25", "hasPart" : "http://eldaddp.azurewebsites.net/answeredquestions.text?hansardHeading=Genetics%3A+Screening&max-answer.dateOfAnswer=2023-10-25", "isPartOf" : "http://eldaddp.azurewebsites.net/answeredquestions.text?hansardHeading=Genetics%3A+Screening&max-answer.dateOfAnswer=2023-10-25", "items" : [{"_about" : "http://data.parliament.uk/resources/1666274", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1666274/answer", "answerText" : {"_value" : "
Whilst no specific assessment has been made of Nolan and Ormondroyd\u2019s systematic review published in March 2023 or Emma Wilkinson\u2019s article published in October 2022, the Government recognises both the opportunities and risks raised by direct-to-consumer genomic tests and is committed to ensuring effective and proportionate regulation.<\/p>
In consideration of the regulation of direct-to-consumer genetic and health testing, the Medicines and Healthcare products Regulatory Agency is working to develop a robust, world-leading regulatory regime for such medical devices that prioritises patient safety.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4948", "label" : {"_value" : "Biography information for Lord Markham"} } , "answeringMemberPrinted" : {"_value" : "Lord Markham"} , "dateOfAnswer" : {"_value" : "2023-10-25", "_datatype" : "dateTime"} , "groupedQuestionUIN" : {"_value" : "HL10677"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2023-10-25T11:20:51.557Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2023-10-19", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Genetics: Screening"} , "houseId" : {"_value" : "2"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25277", "prefLabel" : {"_value" : "House of Lords"} } ], "questionText" : "To ask His Majesty's Government what assessment they have made of Nolan and Ormondroyd\u2019s systematic review published on 30 March in Clinical Genetics, setting out the consequences for consumers and health services of direct-to-consumer genetic testing and how it relates to equitable healthcare; and what assessment they have made of the regulation of direct-to-consumer genetic testing.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4719", "label" : {"_value" : "Biography information for Baroness Bennett of Manor Castle"} } , "tablingMemberPrinted" : [{"_value" : "Baroness Bennett of Manor Castle"} ], "uin" : "HL10676"} , {"_about" : "http://data.parliament.uk/resources/1666275", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1666275/answer", "answerText" : {"_value" : "
Whilst no specific assessment has been made of Nolan and Ormondroyd\u2019s systematic review published in March 2023 or Emma Wilkinson\u2019s article published in October 2022, the Government recognises both the opportunities and risks raised by direct-to-consumer genomic tests and is committed to ensuring effective and proportionate regulation.<\/p>
In consideration of the regulation of direct-to-consumer genetic and health testing, the Medicines and Healthcare products Regulatory Agency is working to develop a robust, world-leading regulatory regime for such medical devices that prioritises patient safety.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4948", "label" : {"_value" : "Biography information for Lord Markham"} } , "answeringMemberPrinted" : {"_value" : "Lord Markham"} , "dateOfAnswer" : {"_value" : "2023-10-25", "_datatype" : "dateTime"} , "groupedQuestionUIN" : {"_value" : "HL10676"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2023-10-25T11:20:51.617Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2023-10-19", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Genetics: Screening"} , "houseId" : {"_value" : "2"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25277", "prefLabel" : {"_value" : "House of Lords"} } ], "questionText" : "To ask His Majesty's Government what assessment they have made of Emma Wilkinson\u2019s article published in October 2022 in The BMJ on the impact of direct-to-consumer testing on the public and the NHS, and of how this relates to the regulation of direct-to-consumer health testing.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4719", "label" : {"_value" : "Biography information for Baroness Bennett of Manor Castle"} } , "tablingMemberPrinted" : [{"_value" : "Baroness Bennett of Manor Castle"} ], "uin" : "HL10677"} , {"_about" : "http://data.parliament.uk/resources/1138859", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1138859/answer", "answerText" : {"_value" : "
NHS England has paused the recruitment for the clinical genetics clinical reference group to ensure the right advisory groups are in place to provide clinical advice across the breadth and depth of the future NHS Genomic Medicine Service.<\/p>
These new arrangements will need consider clinical genetics and genetic counselling, but also wider implications of genomics for the National Health Service. Any future arrangements will have appropriate representation, including patient and public voices.<\/p>
NHS England is progressing the clinical commissioning policy for Preimplantation Genetic Diagnosis (PGD). This work will include assessment of the treatment pathways for existing PGD services and consideration of the ethical issues. NHS England will continue to seek input from clinicians and patients throughout this work.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4008", "label" : {"_value" : "Biography information for Dame Caroline Dinenage"} } , "answeringMemberConstituency" : {"_value" : "Gosport"} , "answeringMemberPrinted" : {"_value" : "Caroline Dinenage"} , "dateOfAnswer" : {"_value" : "2019-07-23", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2019-07-23T16:06:02.047Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2019-07-15", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Genetics: Screening"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health and Social Care, with reference to the Clinical Advisory Group for Genomics, if he will set out (a) its terms of reference, (b) when it will first meet, (c) how patient voice will be incorporated into its work, (d) who it will report to and (e) when the (i) Commissioning Policy for Preimplantation Genetic Diagnosis review and (ii) other work of its predecessor, the Clinical Reference Group for Medical Genetics, will be completed; and if he will make a statement.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4523", "label" : {"_value" : "Biography information for Catherine West"} } , "tablingMemberConstituency" : {"_value" : "Hornsey and Wood Green"} , "tablingMemberPrinted" : [{"_value" : "Catherine West"} ], "uin" : "277243"} , {"_about" : "http://data.parliament.uk/resources/1135183", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1135183/answer", "answerText" : {"_value" : "
During 2019, the National Health Service will begin to offer whole genome sequencing (WGS) as part of clinical care for:<\/p>
- Seriously ill children likely to have a rare genetic disorder;<\/p>
- People with one of 21 rare conditions where current evidence supports early adoption of WGS as a diagnostic test; and<\/p>
- People with specific types of cancer for which there is likely to be the greatest patient benefit from using WGS \u2013 children with cancer, sarcoma and acute myeloid leukaemia.<\/p>
<\/p>
WGS will only replace existing diagnostic tests once the testing is demonstrated to be clinically safe to replace existing diagnostic testing. Initially, existing diagnostic testing will continue to be performed alongside WGS testing where clinically appropriate. This will continue until WGS is able to fully support clinical decision making within clinically appropriate timescales.<\/p>
Current testing for blood cancers includes a number of diagnostic tests, the current expectation is that WGS will not be used to replace tests that require very fast turnaround times (under 24 hours) or high sensitivity.<\/p>
WGS and non-WGS testing that will be available as part of clinical care is outlined in the National Genomic Test Directory at the following link:<\/p>
<\/p>