Hastings Cent Rep. 2018 Jul;48 Suppl 2:S39-S41. doi: 10.1002/hast.884.
The possible integration of genomic sequencing (including whole-genome and whole-exome sequencing) into the three contexts addressed in this special report-state-mandated screening programs, clinical care, and direct-to-consumer services-raises related but distinct legal issues. This essay will outline the legal issues surrounding the integration of genomic sequencing into state newborn screening programs, parental rights to refuse and access sequencing for their newborns in clinical and direct-to-consumer care, and privacy-related legal issues attending the use of sequencing in newborns.
基因组测序(包括全基因组和全外显子组测序)可能会被整合到本报告所讨论的三个情境中,即州政府授权的筛查项目、临床护理和直接面向消费者的服务,这引发了相关但又不同的法律问题。本文将概述基因组测序整合到州新生儿筛查项目中所涉及的法律问题、父母在临床和直接面向消费者护理中拒绝和获取其新生儿测序的权利,以及在新生儿中使用测序所涉及的与隐私相关的法律问题。