Tabor Holly K, Goldenberg Aaron
An associate professor in the Stanford University Department of Medicine and the associate director for clinical ethics and education at the Stanford Center for Biomedical Ethics in Stanford, California.
An associate professor of bioethics and the associate director of the Center for Genetic Research Ethics and Law at Case Western Reserve University School of Medicine in Cleveland, Ohio.
AMA J Ethics. 2018 Sep 1;20(9):E834-840. doi: 10.1001/amajethics.2018.834.
The goal of this article is to examine the intersections of precision health and rare diseases. Specifically, we propose 3 lessons from the last decade of applying genomics to rare diseases: (1) precision can end one odyssey and start another; (2) precise interventions can exacerbate health disparities and create other ethical dilemmas; and (3) democratization of data will transform research and translation. By studying experiences of patients with rare diseases, researchers, clinicians, and policymakers can anticipate similar challenges in precision medicine and hopefully mitigate potential harms or injustices.
本文的目的是探讨精准健康与罕见病的交叉领域。具体而言，我们从过去十年将基因组学应用于罕见病的过程中总结出三点经验教训：（1）精准能够结束一段征程并开启另一段征程；（2）精准干预可能加剧健康差距并引发其他伦理困境；（3）数据的民主化将改变研究与转化。通过研究罕见病患者、研究人员、临床医生和政策制定者的经历，人们可以预见精准医学中类似的挑战，并有望减轻潜在的危害或不公正现象。
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