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題名:基因檢測與遺傳諮詢--重視罕見疾病患者的特殊需求
書刊名:慈濟大學人文社會科學學刊
作者:范麗娟 引用關係
作者(外文):Fann, Lih-Jiuan
出版日期:2006
卷期:5
頁次:頁1-18
主題關鍵詞:罕見疾病基因檢測遺傳諮詢基因醫療權益Rare diseaseGenetic testingGenetic counselingGenetic medicineRight
原始連結:連回原系統網址new window
相關次數:
  • 被引用次數被引用次數:期刊(2) 博士論文(0) 專書(0) 專書論文(0)
  • 排除自我引用排除自我引用:2
  • 共同引用共同引用:5
  • 點閱點閱:17
目前基因研究和基因醫療在國內正如火如荼地進行,每年政府都投入龐大的經費至基因研究,但其中關於罕見疾病之研究數量極為有限。本文主要是針對基因檢測與遺傳諮詢進行探討,企圖從罕見疾病患者的角度出發,探討其所需的項目。最後本文也提出保障罕見疾患者權益的政策建議,希望政府能重視這些「弱勢中的弱勢」。
There is no doubt that the revolution in human genomic research has led to a rapid expansion in genomic medicine. Each year, our government invests vast amount of money into the National Research Program for Genomic Medicine. However, based on the number of projects funded in 2003, there were not many projects targeting special needs of rare disease patients. These special needs include a variety of genetic testing, medicine and drugs, and a high quality of genetic counseling. This paper not only aims at addressing these patients' need for quality genetic counseling, but also proposes guidelines that protect the rights of these patients.
期刊論文
1.Anderson, W. F.(1992)。Human gene therapy。Science,256,808-813。  new window
2.Carlton, T.(1990)。Genetics, group life, and social work with groups in health care practice: A need for knowledge and skill。Health and Social Work,15,83-87。  new window
3.Dumars, K. W.(1978)。Genetic associate training program。Journal of Medical Education,53,768-770。  new window
4.Friedrich, M.(2002)。Preserving privacy, preventing discrimination becomes the province of genetics experts。Journal of American Medical Association,288,815-819。  new window
5.Hamilton, G.(1998)。Positively testing。Families in Society,7,570-576。  new window
6.Kosik, K.(1999)。The fortune teller。The Sciences,39,13-17。  new window
7.Lerner, B.(1999)。Great expectations: Historical perspectives on genetic breast cancer testing。American Journal of Public Health,89,938-944。  new window
8.Macready, N.(1997)。Physicians misinterpret results of genetic test。The LANCET,349,928。  new window
9.Mitka, M.(2002)。New source for information on rare diseases。Medical News and Perspectives,287,2202。  new window
10.Oktay, J.(1998)。Genetics cultural lag: What can social workers do to help?。Health & Social Work,23,310-315。  new window
11.Reynolds, P.、Benkendorf, J. L.(1999)。Genes and generalists: Why we need professionals with added competencies。Culture and Medicine,171,375-379。  new window
12.Ridley, M.(2002)。Look out, prime minister, that napkin could be dangerous。New statesman,15,29-31。  new window
13.Smith, K.(2001)。Genetic disease, genetic testing, and the clinician。Journal of American Association,285,91。  new window
14.黃三榮(20011000)。基因諮詢、基因檢查與基因診斷實務所涉法律問題。生物科技與法律研究通訊,12,25-38。  延伸查詢new window
15.王惠珀、黃育文(20040800)。照顧弱勢族群:「罕見疾病防治及藥物法」的立法及執行。藥業市場雜誌,109,14-17。  延伸查詢new window
16.黃育文、王惠珀(20040900)。照顧弱勢族群:「罕見疾病防治及藥物法」的立法及執行。藥業市場雜誌,110,14-17。  延伸查詢new window
17.陳叔倬(20001000)。原住民人體基因研究之倫理爭議與立法保護。生物科技與法律研究通訊,8,7-28。  延伸查詢new window
18.曾敏傑(20041200)。病患權益倡導的參與式行動研究:以罕見疾病基金會為例。東吳社會工作學報,11,139-195。new window  延伸查詢new window
19.蔡慧聯(20050600)。罕見疾病--普瑞德威利氏症侯群(Prader-Willi Syndrome)個案輔導實例。臺東特教,21,16-23。  延伸查詢new window
學位論文
1.李盈諄(2002)。非營利組織議題之建構與管理策略研究--以罕見疾病基金會為例(碩士論文)。南華大學。  延伸查詢new window
2.柯識鴻(2002)。苯酮尿症患孩母親之壓力源與因應行為及其相關因素之探討(碩士論文)。國立臺灣大學。  延伸查詢new window
3.陳怡如(2003)。鐵達尼歷險記:小胖威利家庭之生命敘說研究(碩士論文)。國立陽明大學。  延伸查詢new window
4.劉文琪(2003)。透納氏症候群青少女家庭參與疾病照護之關注內容及因應行為(碩士論文)。國立陽明大學。  延伸查詢new window
5.羅一中(2003)。華人母親的人際義務--以罕見疾病兒童的家庭為例(碩士論文)。國立中正大學。  延伸查詢new window
6.陳志昇(2000)。醫界孤兒--罕見疾病患者權益之探討(碩士論文)。國立臺灣大學。  延伸查詢new window
其他
1.Holtzman, N.,Watson M.(1997)。Genetic testing report,http://www.genome.gov/10002402, 2004/05/14。  new window
 
 
 
 
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