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The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice

机译:一般人群预防基因组测序的伦理:权利与社会正义

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摘要

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.
机译:DNA测序技术的进步为公共卫生基因组学开辟了新的可能性,尤其是以一般人群预防性基因组测序(PGS)的形式。此类筛查计划将位于公共卫生和预防性卫生保健的交叉点,从而立即邀请并抵制使用临床伦理学和公共卫生伦理学框架。尽管它们之间存在差异,但这些道德框架传统上还是共同关注个人权利。我们研究了预测性基因测试的讨论中经常引用的两个假定的个人权利(不知情权和儿童获得开放未来的权利),以探讨其对评估这种新习俗的潜在贡献。最终,我们得出结论,传统的临床和公共卫生道德框架,尤其是这两项权利,应以社会正义的观点加以补充,以充分刻画一般人群PGS计划的道德层面。

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