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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.

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。

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