Benkendorf J L, Reutenauer J E, Hughes C A, Eads N, Willison J, Powers M, Lerman C
Department of Obstetrics and Gynecology, Georgetown University Medical Center, Washington, DC 20007, USA.
Am J Med Genet. 1997 Dec 19;73(3):296-303. doi: 10.1002/(sici)1096-8628(19971219)73:3<296::aid-ajmg13>3.0.co;2-e.
The identification of BRCA1 and BRCA2, two breast-ovarian cancer susceptibility genes, has brought many ethical and social issues to the forefront. This paper presents the results of a survey assessing the attitudes of 238 unaffected first-degree relatives of women with breast or ovarian cancer regarding the ethical issues of autonomy and confidentiality as they relate to BRCA1/2 testing. Baseline knowledge about BRCA1/2 and ethnic and psychosocial characteristics of our study population were examined to determine their association with women's attitudes. The majority of women (86-87%) felt that health care providers should not disclose the results of genetic tests for breast-ovarian cancer susceptibility to insurance companies or employers without written consent; however, only 56-57% felt that written consent should be required for a spouse or immediate family to receive this information. Ninety-eight percent of the women surveyed agreed that genetic testing for breast-ovarian cancer risk should be voluntary. Likewise, most women (95%) agreed that a person should be able to have genetic testing against a doctor's recommendation and 88% of the women surveyed agreed that parents should be able to consent to genetic susceptibility testing on behalf of their minor children. African American women were less concerned than Caucasian women about the protection of confidentiality in families, they were more likely to agree that an individual should still have access to testing when their physicians recommended against it, and they were more supportive of parents' rights to consent to genetic predisposition testing on behalf of their minor children. Women with coping styles characterized by higher optimism were more likely to favor access to genetic testing when a physician recommended against it, and to support parents' rights to consent to testing of their minor children. Therefore, the setting and manner in which genetic counseling and testing are delivered must be appropriately tailored to reflect these attitudinal differences and preferences.
乳腺癌-卵巢癌易感基因BRCA1和BRCA2的发现，使许多伦理和社会问题成为人们关注的焦点。本文介绍了一项调查结果，该调查评估了238名未患乳腺癌或卵巢癌的女性一级亲属对与BRCA1/2检测相关的自主性和保密性等伦理问题的态度。研究了我们研究人群对BRCA1/2的基线知识以及种族和心理社会特征，以确定它们与女性态度之间的关联。大多数女性（86%-87%）认为，未经书面同意，医疗保健提供者不应向保险公司或雇主透露乳腺癌-卵巢癌易感性基因检测结果；然而，只有56%-57%的女性认为，配偶或直系亲属获取此信息应得到书面同意。98%的受访女性同意，乳腺癌-卵巢癌风险基因检测应该是自愿的。同样，大多数女性（95%）同意，一个人应该能够违背医生的建议进行基因检测，88%的受访女性同意，父母应该能够代表未成年子女同意进行基因易感性检测。非裔美国女性比白人女性对家庭中保密性的保护问题关注度更低，她们更有可能同意，即使医生建议不要检测，个人仍应有权进行检测，并且她们更支持父母代表未成年子女同意进行基因易感性检测的权利。具有较高乐观情绪应对方式的女性，更有可能在医生建议不要检测时赞成进行基因检测，并支持父母代表未成年子女同意检测的权利。因此，提供基因咨询和检测的环境及方式必须进行适当调整，以反映这些态度差异和偏好。
