從遺傳疾病探討基因科技中的人權與性別

Marriage and Reproduction in the Time of "Geneticization": Gender and Human Right Issues

黃怡瑾

《應用倫理教學與研究學刊》 2卷1期 (2007/01) Pp. 13-33

https://doi.org/10.6794/JAETR.200701.0013

摘要

自1990年以來，基因科技隨著「桃莉羊」的複製、人類基因圖譜的解碼完成，加速地發展。科技的進步似乎可創造出更美好的未來，但當「基因」這潘朵拉的盒子被打開後，人類的生育行為與婚姻家庭將面臨何種影響？這不可預知的旅程正在展開，而台灣新生代將如何面對？台灣社會中婚姻與生育的關連性、生育問題上的性別因素、及優生與人權間的對立，因著知曉遺傳疾病與否及是否遺傳的「不確定性」，將帶來婚姻關係與家人互動的諸多新挑戰如：婚姻歧視、生育困擾、個人隱私與就業保險間的衝突及醫病互動不對等富爭議性的問題。當基因科技時代的來臨，首當其衝的是遺傳疾病的帶原者，本文將經「社會學想像力」，以遺傳疾病的帶原者及其家屬的經歷與主觀感受為核心，來想像在基因科技所影響下的婚姻與生育，以生命倫理原則為依據來探討相關的人權與性別議題。

關鍵字

基因科技 ； 婚姻家庭 ； 生命倫理 ； 遺傳疾病 ； 性別

並列摘要

Since the completion of Genome sequences in 2000, the time of ”Geneticization” has forced us to face many unforeseen issues about life. Besides, the ongoing process of genetics possesses significant impacts on the population. If these genetic services are more and more accessible, will the rule of thumb for marriage and family be changed drastically? What moral dilemmas will be confronted regarding decision of marriage, pregnancy and families' interactions?Regarding marriage and family, relationship between marriage and pregnancy, special gender preference for newborns, unbalanced knowledge between physician and patient, and the argument between genetics and human rights are the controversial issues what we confront in Taiwan. The introduction of new genetic technology will, further, bring new challenges to the above mentioned phenomena since most of the uncertainty associated with genetic disease can be cleared in advance.This study will focus on the scope of marriage and family to explore relevant genetic issues. It will includes (1) the potential issues regarding genetics in the marriage and family; (2) the possible consideration of marriage decision and reproduction from new generation due to the genetic technology.This exploratory study will be conducted by the approach of qualitative research. This study will involve the subjects of couples towards marriage, individuals with generic disease, and their relatives. The results will provide a useful reference to improve marriage and family education and address important ethical and psychosocial concerns.

並列關鍵字

family and marriage ； genetic technology ； biomedical ethics ； gender