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Panel Wrestles with WGS Ethics

机译:专家小组与WGS道德规范进行角力

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摘要

The U.S. Presidential Commission for the Study of Bioethi-cal Issues is grappling with many of the ethical issues arising from the falling price—and resulting potential for increased use—of whole genome sequencing in clinical care. The aim is to find the balance between researchers' use of such data and the privacy of individuals whose genomes are under study. Addressing the committee last month, speakers offered varied perspectives on key questions: How is genetic information collected and stored?Who will interpret this genetic data? Is it ethical to allow healthcare providers to interpret the data without a health systems infrastructure to help them interpret it? What will be the privacy protections for patients?The commission plans to discuss its recommendations publicly and come to consensus views at its August meeting. Recommendations are to be finalized in a report to President Barack Obama set to be completed this fall.
机译:美国总统生物伦理问题研究委员会正在努力应对由于全基因组测序在临床护理中的价格下跌以及随之而来的潜在使用增加所引起的许多伦理问题。目的是在研究人员使用此类数据与研究基因组的个人隐私之间找到平衡。上个月在委员会上发言时,发言人就以下关键问题提出了不同观点:遗传信息如何收集和存储?谁来解释这种遗传数据?允许医疗保健提供者在没有医疗系统基础结构的情况下解释数据是否符合道德规范?该委员会将为患者提供什么隐私保护?该委员会计划公开讨论其建议,并在八月份的会议上达成共识。建议将在今年秋天完成的致巴拉克·奥巴马总统的报告中最终确定。

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