Halley Meghan C, Olson Nate W, Ashley Euan A, Goldenberg Aaron J, Tabor Holly K
Hastings Cent Rep. 2024 Dec;54 Suppl 2:S126-S135. doi: 10.1002/hast.4938.
The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit ELSI of translation-normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible.
在过去十年中，基因组学取得了飞速进展，这一进展是在医学和医疗保健领域关于正义的激烈公众讨论中实现的。虽然人们非常强调增加基因组学研究参与的多样性，但对招募的过度狭隘关注回避了对医疗保健差异的认识，而这些差异最终将决定人们获得基因组医学益处的机会。在本文中，我们认为，要在现在和未来实现公正的基因组学，需要一种明确的转化性伦理、法律和社会问题（ELSI）规范性和实用性学术研究，这种研究承认研究与临床护理的相互联系，并将研究人员、机构和资助者在整个转化过程中减轻不公平现象的义务作为核心。我们提出了核心原则，以指导转化性ELSI，并确保这项工作平衡基因组学研究产生的可推广知识的价值以及使这项研究成为可能的个人和社区的价值。
