Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine

• Published in: American journal of bioethics Vol. 21; no. 4; pp. 57 - 66
• Main Author: Lee, Sandra Soo-Jin
• Format: Journal Article
• Language: English
• Published: United States Taylor & Francis 03.04.2021
• Subjects: Altruism; Anthropology; Bioethics; genetic research; human subjects research; Humans; Moral Obligations; Precision Medicine; race and culture/ethnicity; research ethics; Social Justice; Social Responsibility; social science research; Anthropology; genetic research; human subjects research; research ethics; social science research; race and culture/ethnicity
• ISSN: 1526-5161; 1536-0075; 1536-0075
• DOI: 10.1080/15265161.2020.1851813

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.