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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.

DOI:10.1136/jme.29.2.74
PMID:12672886
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC1733689/
Abstract

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.

摘要

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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1
Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information.平衡自主性与责任:生成和披露基因信息的伦理问题。
J Med Ethics. 2003 Apr;29(2):74-9; discussion 80-3. doi: 10.1136/jme.29.2.74.
2
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A descriptive study of BRCA1 testing and reactions to disclosure of test results.一项关于BRCA1基因检测及检测结果披露反应的描述性研究。
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本文引用的文献

1
Genetic secrets and the family.基因奥秘与家庭。
Med Law Rev. 2001 Summer;9(2):130-61. doi: 10.1093/medlaw/9.2.130.
2
Experiences of genetic risk: disclosure and the gendering of responsibility.基因风险的经历:信息披露与责任的性别化
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3
In defence of ignorance: genetic information and the right not to know.为无知辩护:基因信息与不知情权。
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Patients' rights or family responsibilities? Two approaches to genetic testing.患者权利还是家庭责任?基因检测的两种方法。
Med Law Rev. 1998 Spring;6(1):1-41. doi: 10.1093/medlaw/6.1.1.
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Future possibilities in the prevention of breast cancer: intervention strategies in BRCA1 and BRCA2 mutation carriers.预防乳腺癌的未来可能性:BRCA1和BRCA2突变携带者的干预策略。
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7
Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium.乳腺癌家族中BRCA1和BRCA2基因的遗传异质性及外显率分析。乳腺癌连锁协会。
Am J Hum Genet. 1998 Mar;62(3):676-89. doi: 10.1086/301749.
8
Recommendations for follow-up care of individuals with an inherited predisposition to cancer. II. BRCA1 and BRCA2. Cancer Genetics Studies Consortium.癌症遗传易感性个体的后续护理建议。II. BRCA1和BRCA2。癌症遗传学研究联盟。
JAMA. 1997 Mar 26;277(12):997-1003.
9
Prevalence and contribution of BRCA1 mutations in breast cancer and ovarian cancer: results from three U.S. population-based case-control studies of ovarian cancer.BRCA1突变在乳腺癌和卵巢癌中的患病率及贡献:来自美国三项基于人群的卵巢癌病例对照研究的结果
Am J Hum Genet. 1997 Mar;60(3):496-504.
10
Estimates of the gene frequency of BRCA1 and its contribution to breast and ovarian cancer incidence.BRCA1基因频率的估计及其对乳腺癌和卵巢癌发病率的贡献。
Am J Hum Genet. 1995 Dec;57(6):1457-62.