{"id":8332,"date":"2022-06-10T03:48:58","date_gmt":"2022-06-10T03:48:58","guid":{"rendered":"https:\/\/www.booksofall.com\/cn\/?post_type=product&#038;p=8332"},"modified":"2022-06-10T03:50:39","modified_gmt":"2022-06-10T03:50:39","slug":"when-you-have-a-serious-hereditary-disease-who-has-a-right-to-know","status":"publish","type":"product","link":"https:\/\/www.booksofall.com\/cn\/when-you-have-a-serious-hereditary-disease-who-has-a-right-to-know\/","title":{"rendered":"When you have a serious hereditary disease, who has a right to know?"},"content":{"rendered":"<h4 id=\"standfirst\" class=\"article__standfirst\">Genetic diagnosis is getting ever more sophisticated. But as doctors uncover diseases that are hereditary, who needs to know? Shaun Raviv explores the rights \u2013 and duties \u2013 of doctors, patients and families.<\/h4>\n<aside class=\"article__aside\">\n<div class=\"article__aside__section article__share-buttons\" role=\"group\">\n<p>In 2007, a middle-aged British man shot and killed his wife. He was declared mentally incapacitated, convicted of manslaughter and sentenced to hospital care. Two years later, he was diagnosed with Huntington\u2019s disease \u2013 an inherited condition that damages nerve cells in the brain, causing both mental and physical deterioration until finally proving fatal \u2013 which may have contributed to his diminished mental state at the time of the shooting.<\/p>\n<p>The man made it clear to his doctors and social workers that he did not want his daughters to know about his Huntington\u2019s diagnosis. He said he did not want to distress them further after the trauma he had caused by killing their mother. But around the time of the diagnosis, one of his daughters became pregnant.<\/p>\n<p>Huntington\u2019s is a hereditary disease that is autosomal dominant \u2013 if one of your biological parents has the faulty gene, then you have a 50 per cent chance of carrying it as well. And if you have the gene, then you will almost certainly get Huntington\u2019s. A diagnosis can have devastating consequences beyond the initial patient.<\/p>\n<p>Several times doctors discussed with the man the idea of telling his children, who were attending family therapy at an NHS-run facility with members of their father\u2019s medical team. But the man insisted his daughters be kept in the dark. \u201cEspecially the pregnant one until she gives birth,\u201d he told a social worker. He said he was afraid they might get upset, kill themselves or have an abortion.<\/p>\n<h4>Reference:<\/h4>\n<ul>\n<li>The\u00a0<a href=\"http:\/\/www.bailii.org\/ew\/cases\/EWHC\/QB\/2015\/1394.html\">High Court judgment<\/a>\u00a0that threw out the ABC case, and the\u00a0<a href=\"http:\/\/www.bailii.org\/ew\/cases\/EWCA\/Civ\/2017\/336.html\">Court of Appeal judgment<\/a>\u00a0that overturned it.<\/li>\n<li>The\u00a0<a href=\"https:\/\/mosaicscience.com\/law.justia.com\/cases\/florida\/supreme-court\/1995\/84289-0.html\">opinion of the Supreme Court of Florida<\/a>\u00a0on the Pates\u2019s case, which allowed them to take Threlkel to court.<\/li>\n<li>The\u00a0<a href=\"https:\/\/law.justia.com\/cases\/new-jersey\/appellate-division-published\/1996\/a2234-94-opn.html\">opinion of the Superior Court of New Jersey on Donna and Robert Safer\u2019s case<\/a>, which allowed them to take\u00a0the Pack estate to court.<\/li>\n<li><a href=\"http:\/\/endocrinediseases.org\/thyroid\/cancer_medullary.shtml\">A factsheet on medullary thyroid cancer<\/a>\u00a0from the American Association of Endocrine Surgeons.<\/li>\n<li>Roy Gilbar and Charles Foster\u2019s\u00a0<a href=\"https:\/\/academic.oup.com\/medlaw\/article\/26\/1\/125\/4555406\">article on the ABC case<\/a>.<\/li>\n<li><a href=\"https:\/\/ghr.nlm.nih.gov\/condition\/familial-adenomatous-polyposis\">A factsheet on familial adenomatous polyposis<\/a>\u00a0from the US National Library of Medicine.<\/li>\n<li><a href=\"http:\/\/www.bsgm.org.uk\/media\/39563\/consent_and_confidentiality_2011_1_.pdf\">The joint report on consent and confidentiality in clinical genetic practice<\/a>\u00a0authored by the Royal College of Physicians, Royal College of Pathologists and British Society for Genetic Medicine. [PDF]<\/li>\n<li><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC4823639\/\">A 2016 study<\/a>\u00a0that surveyed\u00a0people\u2019s opinions on sharing genetic information.<\/li>\n<li>The right to decide whether or not to be informed about the results of research is enshrined in Article 10 of the\u00a0<a href=\"http:\/\/portal.unesco.org\/en\/ev.php-URL_ID=17720&amp;URL_DO=DO_TOPIC&amp;URL_SECTION=201.html\">International Declaration on Human Genetic Data<\/a>\u00a0and Article 16 of\u00a0<a href=\"https:\/\/rm.coe.int\/CoERMPublicCommonSearchServices\/DisplayDCTMContent?documentId=0900001680084824\">this additional protocol<\/a>\u00a0to the Council of Europe\u2019s Oviedo Convention.<\/li>\n<li>If you\u2019d like to dive deeper into this topic, check out\u00a0our\u00a0<a href=\"https:\/\/mosaicscience.com\/story\/ethics-law-heritable-diseases-doctor-patient-confidentiality-right-to-know-genetic-testing\">briefing<\/a>\u00a0on\u00a0doctor\u2013patient confidentiality, hereditary disease, ethics and law.<\/li>\n<\/ul>\n<\/div>\n<\/aside>\n","protected":false},"excerpt":{"rendered":"<p><iframe style=\"width: 100%; height: 750px; border: none;\" src=\"https:\/\/online.visual-paradigm.com\/share\/book\/when-you-have-a-serious-hereditary-disease-who-has-a-right-to-know-zdspjkm4z?enforceShowPromotionBar=true\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n","protected":false},"featured_media":8342,"template":"","meta":{"_yoast_wpseo_title":"","_yoast_wpseo_metadesc":"Intuitive online diagram maker - Learn how to add line breaks into shapes created using Visual Paradigm's free online diagram editor."},"product_brand":[],"product_cat":[15,181],"product_tag":[],"class_list":{"0":"post-8332","1":"product","2":"type-product","3":"status-publish","4":"has-post-thumbnail","6":"product_cat-all","7":"product_cat-society","9":"first","10":"instock","11":"shipping-taxable","12":"product-type-simple"},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.1.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>When you have a serious hereditary disease, who has a right to know? 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