Beyond ethical enthusiasm: community benefit-sharing, autonomy, and the case for precaution in genomic research

Genomic research promises significant health benefits and has generated broad international support for benefit-sharing as a means of promoting equity. Yet persistent conceptual ambiguities — particularly regarding who should benefit and what constitutes a benefit — continue to complicate ethical implementation. These problems are evident in the World Health Organization’s Guidance for Human Genome Data Collection , Access , Use and Sharing (2024), which commits to ensuring that individuals, families, and communities “fairly benefit” from the use of their genome data while leaving those beneficiary categories undefined and without expressly requiring assessment of harms created by the benefit arrangement itself. This article argues that community- and family-directed benefit-sharing is ethically problematic not merely because of imprecision, but because it can function as a risk-creating practice. Under specifiable structural conditions — ascriptive membership, concentrated representation, costly exit, and weak accountability — transactional collective benefits can generate reasonably foreseeable harms, including social pressure on dissenting individuals, elite capture, and the moralisation of participation. Drawing on relational and African communitarian accounts of autonomy, the article develops a typology of communities, an account of when a collective offer undermines autonomy, and a parallel analysis of the family as beneficiary. To govern these risks, it proposes a weak, procedural precautionary framework: proponents of collective benefit arrangements bear a burden of justification discharged through five operational steps — risk identification, assessment, mitigation, monitoring, and review — with the evidentiary burden scaled to the magnitude of the benefit, the sensitivity of the data, the concentration of local power, and the reversibility of possible harms. By requiring scrutiny rather than assumption, this framework would strengthen the ethical governance of benefit-sharing in genomic research.