From equity to solidarity: how care and relationality transform the debate on justice in genomics.

Authors

Barbara Prainsack

Published in

Journal of community genetics. Volume 17. Issue 4. Aug 11, 2026. Epub Aug 11, 2026.

Abstract

Equity has become central to genomics, yet dominant approaches - focused on fair representation and distribution - often overlook the relational and structural conditions through which genomic practices are produced and experienced. This paper reframes genomic justice by adding care and solidarity to the conversation. Care highlights lived experience, interdependence, and the relational work required to make genomic knowledge meaningful, while solidarity can help to create institutional arrangements grounded in shared vulnerability, indirect reciprocity, and non-humiliation. The paper applies this framework across key domains, including participation, data governance, benefit-sharing, and global collaboration, proposing shifts toward community-led governance, relational data stewardship, and long-term collective returns. It outlines practical design principles that embed equal dignity, trustworthiness, and mutual accountability into genomic institutions. Community genetics is particularly well positioned to operationalise this approach, given its grounding in families and communities and its emphasis on ongoing relationships. Strengthening these practices can support more just, caring, and resilient genomic futures.

PMID:
42579248
Bibliographic data and abstract were imported from PubMed on 11 Aug 2026.

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