遗传性疾病患者生育权与子代权益的伦理冲突——1例外胚层发育不良申请辅助生殖技术助孕案例的伦理分析

Ethical conflict between reproductive rights and offspring rights of patients with genetic disease:an ethical analysis of an ectodermal dysplasia case asking for assisted reproductive technology to assist in pregnancy

随着人类辅助生殖技术的进步,更多的遗传性疾病被发现并通过创新技术的使用拟降低遗传风险,不孕症夫妇的生育权得到更大程度的保护和满足。但对一些特殊遗传病例,子代权益需要被充分考虑。以1例“外胚层发育不良”申请实施人类辅助生殖技术进行助孕的个案为基础进行伦理剖析,揭示在对遗传性疾病患者实施辅助生殖技术治疗中,由于患者生育权与子代权益保护存在矛盾、人类辅助生殖技术实施与阻断遗传风险之间存在矛盾,处理该类病例会面临伦理困境。通过文献回顾提出:在遗传性病例的诊疗及伦理判断过程中,应充分履行知情同意,基于关怀伦理基础,采用叙事医学方法形成医患共同决策,避免家长主义;同时提供充分的信息支持及完善伦理监督机制,以有效应对伦理困境。

With the continuous progress of human assisted reproductive technology(ART),more genetic diseases have been discovered and the use of innovative technologies is intended to reduce genetic risks,and the reproductive rights of infertile couples have been protected and satisfied to a greater extent.However,in some special genetic cases,offspring rights need to be fully considered.This paper conducted an ethical analysis of an“ectodermal dysplasia”case asking for the implementation of human ART to assist in pregnancy,revealing the ethical dilemmas in the implementation of ART for patients with genetic diseases,which were caused by the contradiction between the protection of the patient’s reproductive rights and the offspring rights,as well as the contradiction between the implementation of ART and the blocking of genetic risk.According to the literature review,it is proposed that in the diagnosis,treatment,and ethical judgment process of genetic cases,informed consent should be fully fulfilled.Based on the ethical foundation of care,narrative medicine methods should be used to form doctor-patient joint decision-making,avoiding paternalism.Meanwhile,sufficient information support should be provided and the ethical supervision mechanism should be improved to effectively solve the ethical dilemmas.