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良好的伦理学需要良好的科学:为什么移植项目不应该披露错误归因的亲权。

Good ethics requires good science: why transplant programs should not disclose misattributed parentage.

机构信息

Department of Pediatrics and the MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL.

出版信息

Am J Transplant. 2010 Apr;10(4):742-746. doi: 10.1111/j.1600-6143.2009.03011.x. Epub 2010 Feb 3.

DOI:10.1111/j.1600-6143.2009.03011.x
PMID:20132166
Abstract

In 1996, I argued that the recommendation by the Institute of Medicine (IOM) to inform women when tests reveal misattributed paternity and not to disclose this information to the women's partners was morally wrong. I argued in favor of disclosure to both parties. It is a position that I still hold. But claims of misattributed paternity are not 'incidental findings' as it was called in the old genetics literature, but a rather serious indictment of biological infidelity. In this paper I argue that the tests used by transplant programs for living donor-recipient compatibility are inadequate to accurately determine misattributed paternity. Further I argue that it is not the responsibility of the transplant community to undertake such serious forensic evaluations. Genetic inconsistencies in ABO and HLA inheritance should be reported as variations. Families who want further clarification should be referred to a genetic professional.

摘要

1996 年,我曾提出,医学研究所(IOM)建议在检测结果显示亲子关系错误时告知女性,但不向女性的伴侣披露这些信息,这在道德上是错误的。我主张向双方披露信息。我仍然坚持这一立场。但是,所谓的亲子关系错误认定并不仅仅是旧遗传学文献中所说的“偶然发现”,而是对生物不忠的一种相当严重的指控。在本文中,我认为,移植项目用于供体-受体相容性检测的测试并不足以准确确定亲子关系错误认定。此外,我还认为,进行这种严肃的法医评估并不是移植界的责任。ABO 和 HLA 遗传中的基因不一致应作为变异报告。希望进一步澄清的家庭应被转介给遗传专业人员。

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Good ethics requires good science: why transplant programs should not disclose misattributed parentage.良好的伦理学需要良好的科学:为什么移植项目不应该披露错误归因的亲权。
Am J Transplant. 2010 Apr;10(4):742-746. doi: 10.1111/j.1600-6143.2009.03011.x. Epub 2010 Feb 3.
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Response: Good ethics require good science: why transplant programs should not disclose misattributed parentage.回应:良好的伦理道德需要良好的科学:为何移植项目不应披露错误认定的亲子关系。
Am J Transplant. 2011 Jan;11(1):179; author reply 180-1. doi: 10.1111/j.1600-6143.2010.03307.x.
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Misattributed paternity discovery: A critique of medical organizations' recommendations.错误认定亲子关系的发现:对医学组织建议的批判
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Ethical issues in living-related corneal tissue transplantation.活体相关角膜组织移植中的伦理问题。
J Med Ethics. 2019 Jul;45(7):430-434. doi: 10.1136/medethics-2018-105146. Epub 2019 May 23.
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KDIGO Clinical Practice Guideline on the Evaluation and Care of Living Kidney Donors.KDIGO 活体肾捐献者评估与管理临床实践指南
Transplantation. 2017 Aug;101(8S Suppl 1):S1-S109. doi: 10.1097/TP.0000000000001769.
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To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts.是否告知?遗传学背景下偶然发现的伦理思考系统综述。
Eur J Hum Genet. 2013 Mar;21(3):248-55. doi: 10.1038/ejhg.2012.130. Epub 2012 Jun 27.