{"billNo":"1011213070201700","提案單位/提案委員":"本院委員馬文君等28人","議案名稱":"「優生保健法增訂第九條之一條文草案」，請審議案。","相關附件":[{"網址":"https://ppg.ly.gov.tw/ppg/download/agenda1/02/pdf/08/02/14/LCEWA01_080214_00052.pdf","名稱":"關係文書PDF"},{"網址":"https://ppg.ly.gov.tw/ppg/download/agenda1/02/word/08/02/14/LCEWA01_080214_00052.doc","名稱":"關係文書DOC"}],"關連議案":[],"提案人":["馬文君","江惠貞","楊玉欣","蘇清泉"],"連署人":["羅淑蕾","陳雪生","蔣乃辛","林佳龍","吳育仁","陳碧涵","林正二","簡東明","鄭天財 Sra Kacaw","詹凱臣","盧嘉辰","廖正井","呂學樟","蔡正元","翁重鈞","呂玉玲","陳鎮湘","陳根德","徐少萍","江啟臣","盧秀燕","楊應雄","李鴻鈞","陳超明"],"議案狀態":"交付審查","議案流程":[{"會期":"08-02-14","院會/委員會":"院會","狀態":"排入院會 (交社會福利及衛生環境委員會)","日期":["2012-12-21","2012-12-25"],"會議代碼":"院會-8-2-14"},{"會期":"08-02-14","院會/委員會":"院會","狀態":"交付審查","日期":["2012-12-21","2012-12-25"],"會議代碼":"院會-8-2-14"}],"mtime":"2024-01-19T03:15:35+08:00","屆期":8,"first_time":"2012-12-21","last_time":"2012-12-25","議案類別":"法律案","提案來源":"委員提案","meet_id":"院會-8-2-14","會期":2,"字號":"院總第1140號委員提案第14500號","laws":["02517"],"提案編號":"1140委14500","案由":"本院委員馬文君、江惠貞、楊玉欣、蘇清泉等28人，有鑒於國人家庭計畫生育，因先天基因極有可能生育出遺傳性疾病及罕見疾病的胎兒，但我國對於遺傳性疾病及罕見疾病相關諮詢、篩檢、診斷與治療皆未加以法律明文規範，爰此，基於每個生命都是無價，建議增訂「優生保健法」第九條之一，要求衛生事業主管機關應提供民眾先天性疾病各項資訊，給予相關之教育與宣導，並應協助人民獲得遺傳相關諮詢及遺傳性疾病之篩檢、診斷與治療，以維護胎兒生命權。是否有當？敬請公決。","說明":"一、遺傳性疾病往往造成罕見疾病，和基因有極大的關係，但由於罕見疾病病患人數相對較少，門診需求量低，因此醫院多不設置相關診療專科，即使設立，也鮮少提供遺傳專科充足資源與支持，使得國人家庭計畫生育時，經常忽略遺傳性疾病的風險，在孕前、孕中、孕後面臨此課題時無所適從。\n二、每一個生命都是無價的，無論他是否有缺陷。因此，對於可能有這些特殊情形小孩的家庭，國家應該提供醫療資訊及服務外，也應該提供現有的相關社會福利資源等資訊，讓家庭能更周延的做家庭計畫的考量。","ppg_url":"https://ppg.ly.gov.tw/ppg/bills/1011213070201700/details"}