Columbia University.
Am J Bioeth. 2021 Apr;21(4):57-66. doi: 10.1080/15265161.2020.1851813. Epub 2020 Dec 16.
Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improve human health. Drawing on anthropological framings of the "gift," this paper contextualizes participation in precision medicine as inextricable from social relationships and their ongoing ethical obligations. Going beyond altruism, reframing biospecimen and data collection in terms of socially regulated gift-giving recovers questions of responsibility and care. As opposed to conceiving participation in terms of donations that elide clinical labor critical to precision medicine, the gift metaphor underscores ethical commitments to reciprocity and responsibility. This demands confronting inequities in precision medicine, such as systemic bias and lack of affordability and access. A focus on justice in precision medicine that recognizes the sociality of the gift is a critical frontier for bioethics.
精准医学依赖于参与者自愿提供个人信息的数据和生物样本,他们承诺这一行为最终将产生改善人类健康的知识。本文借鉴人类学对“礼物”的框架,将参与精准医学的情况置于社会关系及其持续的道德义务中,使其不可分割。超越利他主义,将生物样本和数据收集重新定义为受社会规范约束的礼物馈赠,这就涉及到责任和关怀的问题。与将参与精准医学的行为理解为捐赠行为不同,这种行为模糊了对精准医学至关重要的临床劳动,而礼物隐喻则强调了互惠和责任的道德承诺。这就需要正视精准医学中的不平等问题,如系统偏见、可负担性和可及性的缺乏。承认礼物的社会性是精准医学中正义问题的一个关键前沿,也是生物伦理学的一个关键前沿。