未成年人基因檢驗之倫理議題探討

Ethical Issues in Genetic Testing of Minors

呂千佩(CHIEN-PEI LU)

指導教授 ： 何建志

臺北醫學大學/醫學院/醫學人文研究所/碩士(2010年)

https://doi.org/10.6831/TMU.2010.00215

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。

關鍵字

基因檢驗 ； 未成年人

並列摘要

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.

並列關鍵字

Genetic testing ； minors

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