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| 題名: | 未成年人基因檢驗之倫理議題探討 |
| 作者: | 呂千佩 |
| 貢獻者: | 醫學人文研究所
何建志 |
| 關鍵詞: | 基因檢驗;未成年人
Genetic testing;minors |
| 日期: | 2010 |
| 上傳時間: | 2010-09-23 09:43:39 (UTC+8) |
| 摘要: | 基因檢驗可用於診斷個人是否罹患遺傳疾病，或預測帶因者未來健康，但也可能對受檢者或家族帶來心理、社會衝擊。若對未成年人進行症狀前或預測性基因檢驗，將引起更多的倫理、法律與社會爭議。
本論文主要目的在探討對未成年人從事症狀前或預測性基因檢驗之倫理議題，包括：一、對未成年人進行基因檢驗之醫學考量為何？二、基因檢驗是否會對於未成年人及家屬造成心理、社會傷害？三、父母親代替未成年子女行使醫療決定權，是否導致未成年子女權益受到影響？四、西方國家制訂之倫理準則是否能夠完全應用在於我國社會文化中？五、國內遺傳專科醫師之臨床經驗與立場為何？
本研究針對國內外專業學會相關準則及國內法規進行文獻分析，並以深度訪談方式了解國內遺傳專科醫師之經驗、態度與感受。本研究主要發現如下：一、國內、外專業學會準則，原則以醫學利益為判斷標準，以建議是否可對未成年人進行症狀前或預測性基因檢驗，但例外可根據心理、社會利益進行預測性基因檢驗；二、國內法律對於基因檢驗缺乏明文規定，僅能根據一般性民法、醫療法原則處理未成年人基因檢驗事宜，導致國內缺乏明確、具體規範，而可能發生作法不一或爭議情形；三、國內未成年人是否接受基因檢驗，多由父母親代為決定；四、在國內遺傳專科醫師中，持贊成與反對立場者都有；五、遺傳諮詢工作往往由國內遺傳專科醫師提供，而非以團隊方式提進行。
本研究之建議如下：一、針對基因檢驗制訂專法規範，提供醫師與父母參考標準；二、建立遺傳諮詢師認證制度，與醫師合作提供完整遺傳諮詢服務；三、針對基因檢驗之醫學、心理、家庭、社會考量，建立評估機制，以實現未成年人最佳利益；四、在目前法律機制不完整現況下，由醫師以非指導性方式提供受檢者或父母有關基因檢驗之醫學資訊，並說明可能之心理、家庭、社會影響；五、當未成年受檢者已具有溝通能力和識別能力時，應尊重未成年人自主性，並得到他們答應；若未成年受檢者不具有識別能力，則由父母親或法定代理人依據未成年人整體之最佳利益做為考量，代為決定是否進行症狀前或預測性基因檢驗。
Genetic testing can be used to diagnose genetic disorders, or to predict a carrier’s future health. However, genetic testing may also have psychological and social impact on tested individuals, and even their family members. Asymptomatic or predictive genetic testing of minors may generate more controversial ethical, legal and social issues.
The main purpose of this thesis is to explore the ethical and issues involved in the asymptomatic or predictive genetic testing of minors, including: (1) What are the medical considerations for genetic testing of minors? (2) Whether genetic testing would cause psychosocial and social problems for the minors and their families? (3) Whether the rights and interests of minors would be influenced by the decision of their parents? (4) Whether the guidelines developed by the Western countries could be unconditionally applied to our society and culture? (5) What are the clinical experiences and the opinions of our geneticists?
This study is aimed to analyze available literatures regarding the relative guidelines for internal or international professional societies and the national regulations involved in the asymptomatic or predictive genetic testing on the minors, and further interview the expertise in this field to understand the clinical experiences, attitudes, and feelings of the geneticist on this issue. Followings are the main discoveries of this study: (1) All guidelines clearly advanced the idea that the medical benefit is the main justification for asymptomatic or predictive genetic testing of minors, however, issues regarding the psychological or social benefits may be exceptional. (2) In our country, there is no law clearly defining and regulating the genetic testing, and we have only general civil laws and medical laws to deal with genetic testing of minors. Current situation like this may cause various practical problems and controversies. (3) In our country, parents are in fact the decision makers for minors to have genetic testing. (4) The geneticists in our country view this issue positively and negatively. (5) The genetic counseling usually is provided by individual geneticist rather than a team.
According to these findings, we have suggested that: (1) We should set up legal rules about genetic testing to provide reference guidelines for physician and parents. (2) We should establish laws of genetic counselor certification system in cooperation with physicians to provide comprehensive service. (3) We should establish evaluation mechanism according to the medical, psychological, family, social considerations, to achieve the best interests for the minors. (4) Under current legal situations, physicians should provide medical information of genetic testing to individuals and their families in a non-directive manner, and to disclose the psychological, family, social implications. (5) If minors are mature enough, we should respect their autonomy and have their assent before genetic testing. For immature minors, their parents or legal guardian should make the decision according to the best interests of the minors for proceeding asymptomatic or predictive genetic testing. |
| 關聯: | 63頁 |
| 描述: | 第一章 緒論..................................1
第一節 研究動機與目的........................1
第二節 研究方法與範圍........................4
第二章 未成年人基因檢驗倫理議題..............6
第一節 基因檢驗之概念........................7
第二節 常見遺傳性疾病之種類..................12
第三節 未成年人基因檢驗之醫學考量............15
第四節 未成年人基因檢驗之心理考量............18
第五節 未成年人基因檢驗之社會考量............22
第三章 未成年人基因檢驗與自主權..............24
第一節 醫學倫理與法律中的自主權..............24
第二節 未成年人之醫療自主權..................27
第三節 未成年人基因檢驗與自主權..............31
第四節 未成年人基因檢驗與父母權威............35
第四章 國內未成年人基因檢驗之法規與準則......37
第一節 現行法規..............................37
第二節 專業學會準則..........................43
第五章 國內臨床實務經驗......................45
第一節 父母意見居主導性......................45
第二節 對未成年人權益之影響..................49
第三節 國內臨床遺傳學家之態度................51
第四節 病友團體之角色........................54
第六章 結論與建議............................55
第一節 研究結論..............................55
第二節 研究限制與建議........................58
參考文獻.....................................61
一、中文部分：
中華民國人類遺傳學會（2007a），單基因晚發性疾病遺傳檢驗及諮詢倫理準則。
中華民國人類遺傳學會（2007b），遺傳檢驗及諮詢一般倫理準則。
王乃鋒（2007）。解讀生醫晶片。于天網路印刷有限公司，頁54-61。
王作仁（1993）。醫學遺傳學。聯經出版事業公司，頁1-5。
王美仁、林秀娟（2009）。草擬台灣基因檢測倫理指導綱領。法律與生命科學，第3卷第4期，頁1-21。
王智弘（1996）。諮商未成年當事人的倫理問題。輔導學報，19期，頁287-321。
何建志、呂千佩（2009）。歐洲人類遺傳學會未成年人基因檢驗準則評述。法律與生命科學，第3卷第4期，頁35-45。
李震山（1999）從生命權與自決權之關係論生前預囑與安寧照護之法律問題。國立中正大學法學集刊，第2期，頁325-355。
邱文達、侯勝茂、石崇良（2004）。病人安全與醫學倫理-建構以病人為中心的醫療體系。台灣醫學人文學刊，第5卷第1&2期，頁66-96。
胡淑貞、莊茹潔（2004）。常見遺傳疾病。國立成功大學，頁12-27。
張文貞（2004）。打開潘朵拉的盒子之後-基因篩檢的挑戰。科學發展，378期，頁13-21。
楊秀儀（2002）。病人，家屬，社會：論基因年代病患自主權可能之發展。國立台灣大學法學論叢，第31卷第5期，頁1-31。
楊琇茹（2004）。從病患自主權看病患家屬參與醫療決定之權限。中原大學財經法律學系碩士論文。
劉宏恩（2009）。基因科技倫理與法律：生物醫學研究的自侓、他侓與國家規範。五南圖書出版股份有限公司，頁241。
蔡甫昌（2006）。生命倫理四原則方法。收錄於戴正德、李明濱編，醫學倫理導論，頁41-58，2006年，台北：教育部。
鍾竺均、陳偉（2007）。生物技術概論。新文京開發出版股份有限公司，頁189-191。
二、英文部分：
Bartels, Dianne M., Bonnie S. LeRoy, Patricia McCarthy, Arthur L. Caplan. (1997).
Nondirectiveness in genetic counseling: A survey of practitioners. American Journal of Medical Genetics, 72(2):172-179.
Babul, Riyana, S. Adam, B. Kremer, S. Dufrasne, S. Wiggins, M. Huggins, J. Theilmann, M. Bloch, and M. R. Hayden. (1993).
Attitudes Toward Direct Predictive Testing for the huntington disease gene. JAMA, 270(19): 2321-2325.
Bioethics Committee Canadian Paediatric Society. (2003).
Guidelines for genetic testing of healthy children. Paediatr Child Health, 8(1): 42-45.
Borry P, Stultiens L, Nys H, Cassiman J-J, Dierickx K. (2006)
Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet, 70: 374-381.
Borry, Pascal, Gerry Evers-Kiebooms, Martina C Cornel, Angus Clarke, and Kris Dierickx. (2009).
Genetic testing in asymptomatic minors: background considerations towards ESHG recommendations. Eur J Hum Genet, 17: 711-719.
Clarke, A. (1994).
The genetic testing of children. Working Party of the Clinical Genetics Society (UK). J Med Gene, 31(10):785-797.
Duncan, Rony E., Julian Savulescu, Lynn Gillam, Robert Williamson, and Martin B. Delatycki, (2005).
An international survey of predictive genetic testing in children for adult onset conditions. Genet Med, 7(6):390–396.
European Society of Human Genetics. (2009).
Genetic testing in asymptomatic Minors: recommendations of the European Society of Human Genetics. Eur J Hum Genet, 17: 720-721.
Human Genetics Society of Australasia. (2008).
Pre-symptomatic and predictive testing in children and young people. Retrieved June 30, 2010, from the World Wide Web: https://www.hgsa.org.au/website/wp-content/uploads/2009/12/2008-PS02.pdf.
Holland, Julie. (1997).
Should parent be permitted to authorize genetic testing for their children? Family Law Quarterly, 31:321-353.
National Human Genome Research Institute. (2010).
Frequently asked questions about genetic testing. Retrieved June 30, 2010, from the World Wide Web: http://www.genome.gov/19516567.
Secretary’s Advisory Committee on Genetics, Health, and Society. (2008).
U.S. system of oversight of genetic testing: a response to the charge of the Secretary of Health and Human Services.
Skirton, H.(1998).
Telling the children; in: Clarke A (eds): The genetic testing of children. (pp. 103-111). Oxford: Bios.
The American Society of Human Genetics Board of Directors and The American College of Medical Genetic (1995).
Points to consider: ethical, legal and psychosocial implications of genetic testing in children and adolescents. Am. J. Hum. Genet, 57:1233-1241.
碩士
指導教授-何建志
委員-蘇怡寧
委員-沈芯伃 |
| 資料類型: | thesis |
| 顯示於類別: | [醫學人文研究所] 博碩士論文
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