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'would you test your children without their consent?' and other sticky dilemmas in the field of cancer genetic testing

机译:“您会未经孩子的同意对孩子进行测试吗?”和癌症基因检测领域的其他难题

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Cancer genetic testing is surrounded by myriad ethical, legal, and psychosocial implications which are being revisited as testing expands into an everyday practice and into more complicated areas like whole exome and direct-to-consumer testing. We chose to survey cancer genetic counselors and physicians from a wide range of non-genetics specialties to determine what they would do if faced with the complex decisions associated with cancer genetic testing, how their views compare, and how they align with current guidelines and data. Genetic counselors were significantly more likely than non-genetics physicians to bill their insurance for testing (94.9 vs. 86.8 %; p = 0.001) and purchase life insurance before testing (86.6 vs. 68.6 %; p = 0.000) and were less likely to use an alias (3.2 vs. 13.2 %; p = 0.000) or order testing on their own DNA (15.3 vs. 24.2 %; p = 0.004). They were also less likely to test their minor children (0.9 vs. 33.1 %; p = 0.000) or test their children without their knowledge and consent/assent (1.4 vs.11.5 %; p = 0.000). The results of our study indicate that there is wide variation regarding what clinicians predict they would do in the areas of ethical, legal and psychosocial issues in cancer genetic testing. Cancer genetic counselors' choices are more aligned with professional guidelines, likely due to their experience in the field and awareness of current guidelines. These data are a starting point for a broader discussion of who should offer cancer genetic counseling and testing to patients, particularly as the complexity of the available testing options and associated issues increase with whole exome sequencing.
机译:癌症基因检测被各种伦理,法律和社会心理影响所包围,随着检测扩展到日常实践以及更复杂的领域(如整个外显子组和直接面向消费者的检测),人们正在重新审视它们。我们选择对来自各种非遗传学专业的癌症遗传咨询师和医师进行调查,以确定面对癌症遗传测试相关的复杂决策时他们将如何做,他们的观点如何比较以及如何与当前的指南和数据保持一致。与非遗传学医师相比,遗传咨询师更有可能为他们的测试开具账单(94.9比86.8%; p = 0.001),并在测试前购买人寿保险(86.6%对68.6%; p = 0.000),并且不太可能使用别名(3.2 vs. 13.2%; p = 0.000)或对自己的DNA进行顺序测试(15.3 vs. 24.2%; p = 0.004)。他们也不太可能对未成年子女进行测试(0.9比33.1%; p = 0.000)或在没有他们的知识和同意/同意的情况下对孩子进行测试(1.4对11.5%; p = 0.000)。我们的研究结果表明,临床医生预测他们将在癌症基因检测的伦理,法律和社会心理问题领域做的工作存在很大差异。癌症遗传咨询师的选择更符合专业准则,这可能是由于他们在该领域的经验以及对当前准则的了解。这些数据是更广泛讨论谁应该向患者提供癌症遗传咨询和测试的起点,尤其是随着可用测试选项的复杂性和相关问题随着整个外显子组测序的增加而增加。

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