Drifting Away from Informed Consent in the Era of Personalized Medicine.
Drifting Away from Informed Consent in the Era of Personalized Medicine.
复制标题
个性化医疗时代远离知情同意。
DOI：
10.1002/hast.470
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发表时间：
2015
期刊：
影响因子：
--
通讯作者：
Parens,Erik
中科院分区：
文献类型：
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作者：
Parens,Erik
根据一位生物技术领导者的说法，对一个人基因组中所有DNA进行测序的价格下降得如此之快，以至于很快它的成本就不会比冲厕所高出太多。以更低的成本获得所有基因组数据不仅激发了生物技术投资者和研究人员的想象力，也激发了总统和许多国会议员的想象力。他们设想这些数据将迎来一个“个性化医疗”的时代，在这个时代，医疗保健是根据个人的基因组量身定制的。“精准医学”这个新名称不应该分散我们的注意力，因为它所依赖的基因组信息比任何人所希望的都要复杂、不确定和模糊，也不应该分散我们对一个重要伦理问题的注意力。不幸的是，过去15年的一些发展表明，在我们对以更低成本收集基因组数据的技术能力感到兴奋的同时，我们正在偏离长期以来的基本道德承诺：为人们提供一个过程，使他们能够在自己或其他任何人访问他们的遗传信息之前提供知情同意。
The price of sequencing all the DNA in a person's genome is falling so fast that, according to one biotech leader, soon it won't cost much more than flushing a toilet. Getting all that genomic data at an ever‐lower cost excites the imaginations not only of biotech investors and researchers but also of the President and many members of Congress. They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes. The new name “precision medicine” should not distract us from the fact that the genomic information it depends on is more complex, uncertain, and ambiguous than anyone had hoped, nor should it distract us from an important ethical point. Unfortunately, several developments of the last fifteen years suggest that, in our excitement about the technological capacity to gather genomic data at an ever lower cost, we are drifting away from what has long been a basic ethical commitment: to offer persons a process that enables them to provide informed consent before they or anyone else accesses their genetic information.