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How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States.女性如何做出决定?在美国全国性临床样本中接受或拒绝BRCA1/2检测。
Community Genet. 2006;9(2):78-86. doi: 10.1159/000091484.
2
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Low rates of acceptance of BRCA1 and BRCA2 test results among African American women at increased risk for hereditary breast-ovarian cancer.遗传性乳腺癌-卵巢癌风险增加的非裔美国女性对BRCA1和BRCA2检测结果的接受率较低。
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Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer.有乳腺癌或卵巢癌家族史的女性在BRCA1/2检测使用方面的种族差异。
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Cancers (Basel). 2024 Jun 25;16(13):2324. doi: 10.3390/cancers16132324.
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J Adv Pract Oncol. 2021 Sep;12(7):693-701. doi: 10.6004/jadpro.2021.12.7.3. Epub 2021 Sep 1.
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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage.超过十年来,人们对《遗传信息非歧视法案》(GINA)一直缺乏了解和误解。
Genet Med. 2021 Dec;23(12):2324-2334. doi: 10.1038/s41436-021-01268-w. Epub 2021 Aug 16.
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Ethical Issues in Intraoperative Neuroscience Research: Assessing Subjects' Recall of Informed Consent and Motivations for Participation.术中神经科学研究中的伦理问题:评估受试者对知情同意的回忆和参与动机。
AJOB Empir Bioeth. 2022 Jan-Mar;13(1):57-66. doi: 10.1080/23294515.2021.1941415. Epub 2021 Jul 6.
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Knowledge, Attitudes, Willingness to Pay, and Patient Preferences About Genetic Testing and Subsequent Risk Management for Cancer Prevention.关于癌症预防的遗传检测和后续风险管理的知识、态度、支付意愿和患者偏好。
J Cancer Educ. 2022 Apr;37(2):362-369. doi: 10.1007/s13187-020-01823-0.
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Young Women's Perceptions Regarding Communication with Healthcare Providers About Breast Cancer, Risk, and Prevention.年轻女性对与医疗保健提供者就乳腺癌、风险和预防进行沟通的看法。
J Womens Health (Larchmt). 2018 Feb;27(2):162-170. doi: 10.1089/jwh.2016.6140. Epub 2017 May 4.
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本文引用的文献

1
A qualitative study of women's views on medical confidentiality.关于女性对医疗保密看法的定性研究。
J Med Ethics. 2005 Sep;31(9):499-504. doi: 10.1136/jme.2004.010280.
2
Psychological impact of genetic testing for breast cancer susceptibility in women of Ashkenazi Jewish background: a prospective study.阿什肯纳兹犹太背景女性乳腺癌易感性基因检测的心理影响:一项前瞻性研究。
Genet Test. 2004 Fall;8(3):240-7. doi: 10.1089/gte.2004.8.240.
3
Predictors of cognitive appraisals following genetic testing for BRCA1 and BRCA2 mutations.BRCA1和BRCA2基因突变基因检测后认知评估的预测因素。
J Behav Med. 2004 Aug;27(4):373-92. doi: 10.1023/b:jobm.0000042411.56032.42.
4
BRCA1/2 testing in hereditary breast and ovarian cancer families: effectiveness of problem-solving training as a counseling intervention.遗传性乳腺癌和卵巢癌家族中的BRCA1/2检测:解决问题培训作为一种咨询干预措施的有效性
Am J Med Genet A. 2004 Oct 15;130A(3):221-7. doi: 10.1002/ajmg.a.30265.
5
American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility.美国临床肿瘤学会政策声明更新:癌症易感性基因检测
J Clin Oncol. 2003 Jun 15;21(12):2397-406. doi: 10.1200/JCO.2003.03.189. Epub 2003 Apr 11.
6
Genetic testing for a BRCA1 mutation: prophylactic surgery and screening behavior in women 2 years post testing.BRCA1基因突变的基因检测:检测后2年女性的预防性手术和筛查行为
Am J Med Genet A. 2003 Apr 30;118A(3):201-9. doi: 10.1002/ajmg.a.10102.
7
Early adoption of BRCA1/2 testing: who and why.BRCA1/2检测的早期采用:对象及原因
Genet Med. 2003 Mar-Apr;5(2):92-8. doi: 10.1097/01.GIM.0000056829.76915.2A.
8
Intention to pursue genetic testing for breast cancer among women due for screening mammography.因应接受乳腺钼靶筛查的女性中进行乳腺癌基因检测的意向。
Cancer Epidemiol Biomarkers Prev. 2003 Feb;12(2):96-102.
9
Psychosocial predictors of BRCA counseling and testing decisions among urban African-American women.城市非裔美国女性中BRCA咨询和检测决策的心理社会预测因素
Cancer Epidemiol Biomarkers Prev. 2002 Dec;11(12):1579-85.
10
What does my doctor think? Preferences for knowing the doctor's opinion among women considering clinical testing for BRCA1/2 mutations.我的医生怎么看?在考虑进行BRCA1/2基因突变临床检测的女性中,她们对于了解医生意见的偏好。
Genet Test. 2002 Summer;6(2):115-8. doi: 10.1089/10906570260199366.

女性如何做出决定?在美国全国性临床样本中接受或拒绝BRCA1/2检测。

How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States.

作者信息

Sankar Pamela, Wolpe Paul Root, Jones Nora L, Cho Mildred

机构信息

Center for Bioethics, University of Pennsylvania, Philadelphia, PA 19104, USA.

出版信息

Community Genet. 2006;9(2):78-86. doi: 10.1159/000091484.

DOI:10.1159/000091484
PMID:16612057
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC1317096/
Abstract

OBJECTIVE

To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women's decision to have clinical BRCA1/2 testing.

METHODS

Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing.

RESULTS

Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice.

CONCLUSION

The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.

摘要

目的

探讨从业者、知情同意和遗传咨询在基因检测决策中的作用,并评估它们对女性进行临床BRCA1/2检测决策的相对影响。

方法

采用定性研究方法,对68名考虑进行临床BRCA1/2检测的女性进行深入的开放式访谈。

结果

发现略少于一半考虑进行BRCA1/2检测的女性,无论从业者的态度或建议如何,都有明确且预先存在的检测或不检测的意愿。

结论

接受或拒绝基因检测的决定是一个复杂过程的结果,该过程超越了医疗保健提供者与患者之间的互动,这表明应谨慎避免单纯依赖知情同意或咨询过程。