Abstract

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.

摘要

精密医学依赖于参与者的数据和生物标本，他们愿意提供自己的个人信息，并承诺该行为最终会产生可改善人类健康的知识。借鉴“礼物”的人类学框架，本文将参与精准医学的情况视作社会关系及其持续的道德义务密不可分的。超越利他主义，根据社会规范的送礼方式重新定义生物样本和数据收集，可以解决责任和关怀的问题。与通过捐赠消除参与对精密医学至关重要的临床工作的捐赠方式来接受参与相比，礼物的隐喻强调了对互惠和责任的道德承诺。这就需要面对精密医学领域的不平等现象，例如系统性偏见以及缺乏可负担性和可及性。专注于精准医学的正义能够识别礼物的社会性是生物伦理学的重要前沿。