臺灣遺傳檢驗與咨詢施行之現況分析與倫理反省

Reflection on the Practice and Ethics of Genetic Testing and Counseling in Taiwan

蔡甫昌(Fu-Chang Tsai) ； 張至寧(Chin-Ning Chang) ； 楊智超(Chih-Chao Yang) ； 胡務亮(Wuh-Liang Hwu)

《Journal of Medical Education》 12卷3期 (2008/09) Pp. 44-63

https://doi.org/10.6145/jme.200809_12(3).0006

摘要

本文對於我國遺傳檢驗及諮詢的政策制度流變、執業現況進行回顧並提出初步倫理反省。作者指出我國已由過去偏重優生保健與遺傳檢驗之業務，逐漸轉變為開始同時重視遺傳諮詢服務，然而整體而言無論是政府政策、社會制度、專業組織或第一線醫護人員、諮詢團隊成員等，在遺傳諮詢服務之提供上應繼續追求質與量的提升。例如規劃更完善的遺傳諮詢人員教育訓練考評制度、加強對執業上可能接觸遺傳檢驗及諮詢的專業人士提供遺傳教育、促進衛生教育以提高民眾對於遺傳疾病之認識及對患者之接納、減少對遺傳病患的污名化、改善社會福利與救助制度以促進生育選擇的自主、獎勵有關遺傳檢驗與諮詢之實證研究等。作者並引用Emanuel及Emanuel所提四種醫病關係模式於分析諮詢者與受檢者間的互動，進一步思考有關非指示性(non-directiveness)、尊重病患自主、造福病患等倫理概念的意涵；作者主張合乎倫理的遺傳諮詢旨在協助受檢者運用遺傳服務安排自己的人生計畫（包括婚育計畫、生涯規劃等），因實際承受遺傳檢驗結果與疾病影響的是受檢者個人及家屬，諮詢者無法全然掌握他們的價值觀與倫理抉擇，因此不宜採「父權模式」代為決定；但是諮詢者必須善盡專業上告知與行善之義務，盡可能協助當事人思考自己的人生目標、考慮可能承受之衝擊，以作出知情抉擇，因此兼採「詮釋模式」或「審議模式」的諮詢方式是較適切的。

關鍵字

遺傳檢驗 ； 遺傳諮詢 ； 尊重自主 ； 非指示性 ； 遺傳倫理

並列摘要

This paper provides a comprehensive review of the development and practice of genetic testing and counseling in Taiwan. Ethical reflections on the current situation and on future developments are put forward. Although national policy now emphasizes more the importance of genetic counseling, rather than merely stressing the practice of genetic testing as a means of preventing birth defects, progress is still needed in terms of governmental policy, the social welfare system, and professional organizations. In addition, individual health care professionals and genetic counselors also need to act in order to improve the quality and quantity of genetic counseling. Moreover, the following improvements are advised by the authors: better professional training of genetic counselors, an improved evaluation system for genetic counselors, continuing education in genetic testing and counseling that targets general health care professionals, health education of the general public concerning genetic diseases and genetic testing, an effort to decrease the social stigmatization associated with genetic disorders, an improved social welfare system, better public education to increase the social acceptance of patients with genetic disorders, an enhancement of reproductive freedom and the encouragement of empirical research. The authors also argue whether ＜||＞the interpretive model＜||＞ or ＜||＞the deliberative model＜||＞ of doctor-patient interaction should be favored by the genetic counseling service.

並列關鍵字

genetic ； testing ； counseling ； respect for autonomy ； nondirectiveness ； ethics

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