Parent Opinions Regarding the Genetic Testing of Minors for BRCA1/2
Parent Opinions Regarding the Genetic Testing of Minors for BRCA1/2
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DOI：
10.1200/jco.2009.27.2971
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发表时间：
2010-07-20
影响因子：
45.3
通讯作者：
Daugherty, Christopher K.
中科院分区：
文献类型：
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作者：
Bradbury, Angela R.;Patrick-Miller, Linda;Daugherty, Christopher K.
目的：虽然目前不建议对未成年人进行成人遗传性癌症综合征的基因检测，但其风险和益处仍在争论中。因此，我们评估了父母对未成年人BRCA1/2检测的意见，一般情况下，假设父母自己的未成年子女也是如此。方法采用半结构化访谈法，评估家长对未成年人BRCA1/2基因检测的意见，以及家长对这些意见的理由和相关因素。结果在两个学术癌症风险评估项目中，共有246名接受BRCA1/2测试的家长完成了访谈（有效率为60%）。在回答一个二分法问题时，37%的父母支持对未成年人进行测试。对一项开放式问题的回答表明，47%的人支持在某些或所有情况下对未成年人进行测试。父母BRCA1/2检测阴性（P = .02）、父母性别（P = .03）、少数民族（P = .01）与未成年人检测支持度独立相关。在回答一个二分法问题时，44%的父母表示对测试自己的未成年子女有假设的兴趣。对一个开放式问题的回答表明，假设55%的人会考虑在某些或所有情况下对他们的孩子进行测试。父母阴性检测结果（P = 0.01）、大学学历以下（P = 0.01）和子女平均年龄较大（P = 0.05）与对自己孩子进行检测的兴趣相关。结论家长对未成年人BRCA1/2基因检测的意见存在分歧。鉴于缺乏支持允许或限制未成年人BRCA1/2检测的证据，需要进一步评估向未成年人提供成人发病疾病的遗传风险信息和基因检测的风险和益处，以便为临床实践和指南提供信息。
PurposeAlthough not currently recommended, genetic testing of minors for adult hereditary cancer syndromes, along with risks and benefits, is still being debated. Thus, we evaluated parent opinions regarding BRCA1/2 testing of minors, in general, and hypothetically, for parents' own minor child.MethodsSemistructured interviews were conducted to assess parent opinions regarding BRCA1/2 testing in minors, along with parent rationale for and factors associated with these opinions.ResultsIn total, 246 parents at two academic cancer risk assessment programs who underwent BRCA1/2 testing completed the interview (60% response rate). In response to a dichotomous question, 37% of parents supported testing minors. Responses to an open-ended query suggest that 47% support testing minors in some or all circumstances. Parent negative BRCA1/2 test result (P = .02), parent male sex (P = .03), and minority race (P = .01) were independently associated with support of testing minors. In response to a dichotomous question, 44% of parents reported hypothetical interest in testing their own minor offspring. Responses to an open-ended query suggest that 55% would consider, hypothetically, testing their child in some or all circumstances. Parent negative test result (P = .01), less than a college education (P = .01), and older mean offspring age (P = .05) were associated with interest in testing one's own child.ConclusionParents' opinions regarding BRCA1/2 testing of minors are divided. Given the lack of evidence supporting either the permission or restriction of BRCA1/2 testing in minors, further evaluation of the risks and benefits of providing genetic risk information and genetic testing to minors for adult-onset disease is needed to inform clinical practice and guidelines.