平衡自主性与责任：生成和披露基因信息的伦理问题。
Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.
作者信息
Hallowell N, Foster C, Eeles R, Ardern-Jones A, Murday V, Watson M
机构信息
The Institute of Cancer Research, London, UK.
出版信息
J Med Ethics. 2003 Apr;29(2):74-9; discussion 80-3. doi: 10.1136/jme.29.2.74.
Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing-BRCA1/2 mutation searching-this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed.
本文利用在一项对30名接受过基因检测（BRCA1/2突变检测）的女性进行的回顾性访谈研究中获得的数据，描述了先前被诊断患有乳腺癌/卵巢癌的女性如何看待自己在生成关于自身及其家庭的基因信息方面所扮演的角色。研究发现，在描述她们进行DNA检测的动机以及在家庭内部披露基因信息的经历时，这些女性为自己的行为提供了基于关怀伦理的理由。最后，研究认为生成基因信息并将其透露给亲属会引发不同类型的伦理问题。文中还讨论了这些研究结果对基因检测背景下有关知情选择的伦理辩论的影响。
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