Hastings Cent Rep. 2020 May;50 Suppl 1:S2-S5. doi: 10.1002/hast.1149.
The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions facing medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the "common sense" of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart-and historically has thwarted-medicine from genuinely advancing justice.
坚信并希望正义处于医学规范的核心地位,而生物伦理学的永恒任务是将正义问题应用于医学实践。在这种观点下,正义是医学的命脉,是医学促进生命而不是减损生命的关键。正是在这种更大的、历史的、交叉的、批判的和伦理思维的背景下,我们必须解决医学面临的紧迫问题,包括基因组知识对人类生命的重要性和作用的问题。第二个前提是,至少在原则上,基因组学产生的知识既可以是一种礼物,也可以是一种负担,或者同时兼具两者。也就是说,一方面,基因组知识是一种礼物,它为我们提供了对疾病遗传驱动因素以及我们祖先地理路径的新见解。另一方面,它也是一种负担,带来了新的义务、新的社会分类形式和新的监控形式。由于在许多方面,基因组知识是一种“常识”,因此本特别报告包含了九篇文章,重点关注这种知识如何成为一种负担,这种负担有可能阻碍——而且在历史上已经阻碍了——医学真正实现正义。