Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine

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.

Keywords:

• Anthropology
• genetic research
• human subjects research
• research ethics
• social science research
• race and culture/ethnicity

This article is referred to by:

Experiences at a Federally Qualified Health Center Support Expanded Conception of the Gifts of Precision Medicine

We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine

Reciprocity’s Baggage

Responsible Research with Human Tissues: The Need for Reciprocity Toward Both Collectives and Individuals

Precision Medicine, Data, and the Anthropology of Social Status

Aporia of the Gift: Precision Medicine’s Obligations Without Expectations

The Underdeveloped “Gift”: Ethics in Implementing Precision Medicine Research

Gift, Reciprocity and Learning Health Systems

Fostering Relationships in Pediatric Oncology Research: A Relational Ethics Approach to Clinically Integrated Research

Response to Open Peer Commentaries: Distinguishing the “Gift” from “Donation” as a Path toward Reciprocity and Relational Ethics

The Gift in Precision Medicine: Unwrapping the Significance of Reciprocity and Generosity

A Value-Oriented Framework for Precision Medicine

Additional information

Funding

This work was supported by National Human Genome Research Institute [1R03HG010178-01].