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“有义务的外国人”:认识到精子捐赠者披露基因信息的道德义务

"Obligated aliens": recognizing sperm donors' ethical obligation to disclose genetic information.

作者信息

Tamir Sivan

机构信息

Genetic Policy and Bioethics Unit, Gertner Institute for Epidemiology and Health Policy Research.

出版信息

Kennedy Inst Ethics J. 2013 Mar;23(1):19-52. doi: 10.1353/ken.2013.0001.

Abstract

Sperm donors' obligations are typically constrained to the immediate circumstances surrounding the donation and to its time frame. This paper makes the case for recognizing an ongoing ethical obligation that binds sperm donors to disclose, in a timely manner, meaningful genetic information to recipients and donor-conceived children. The paper delineates and conceptualizes the suggested (potentially reciprocal) duty and argues that it is not the genetic link between the donor and the donor-conceived child that binds donors by said duty, but rather social responsibility. Accordingly, an original perception of the donor as an obligated alien is suggested and developed. The main thesis of the paper is supported inter alia by a comparison between transmitting infectious diseases and passing faulty genes on to donor-conceived children. The paper also provides an in-depth analysis of the conflicting interests of the parties generated by such an obligation and proposes a model for embedding this ethical duty in a (legal) contractual framework.

摘要

精子捐献者的义务通常局限于与捐献直接相关的具体情形及其时间范围。本文主张应认识到精子捐献者负有持续的道德义务,即及时向受赠者及通过捐献受孕出生的子女披露有意义的基因信息。本文阐述并概念化了这一建议的(可能具有相互性的)义务,并论证了约束捐献者履行该义务的并非捐献者与通过捐献受孕出生子女之间的基因联系,而是社会责任。据此,提出并阐述了对捐献者作为负有义务的局外人的一种全新认知。本文的主要论点尤其得到了将传播传染病与将缺陷基因传递给通过捐献受孕出生子女进行比较的支持。本文还深入分析了这一义务所引发的各方利益冲突,并提出了将这一道德义务纳入(法律)合同框架的模式。

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