Morrissey Clair, Walker Rebecca L
University of North Carolina, Chapel Hill, North Carolina, USA.
Occidental College, Los Angeles, California, USA.
J Med Philos. 2018 Jan 12;43(1):22-43. doi: 10.1093/jmp/jhx034.
Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing (PGS). Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights-the right not to know, and the child's right to an open future-frequently invoked in discussions of predictive genetic testing, in order to explore their potential contribution to evaluating this new practice. Ultimately, we conclude that traditional clinical and public health ethics frameworks, and these two rights in particular, should be complemented by a social justice perspective in order adequately to characterize the ethical dimensions of general population PGS programs.
DNA测序技术的进步为公共卫生基因组学带来了新的可能性，尤其是以普通人群预防性基因组测序（PGS）的形式。此类筛查项目将处于公共卫生与预防性医疗保健的交叉点，因此既会引发对临床伦理和公共卫生伦理框架的使用，同时也会对此加以抵制。尽管这些伦理框架存在差异，但传统上它们都共同关注个人权利。我们审视了在预测性基因检测讨论中经常被援引的两项假定的个人权利——不知情权和儿童拥有开放未来的权利，以探讨它们对评估这种新做法的潜在贡献。最终，我们得出结论，传统的临床和公共卫生伦理框架，尤其是这两项权利，应以社会正义视角加以补充，以便充分描述普通人群PGS项目的伦理维度。
