Beyond initial authorisation: the distributed implementation of consent in federated genomic research

A key condition for contemporary genomic research is the reuse of large-scale datasets across institutions. A federated programme allows for the analysis of distributed datasets, and it can help support privacy and local control. However, in such architectures, informed consent can play a role far removed from the initial encounter in which it was obtained. This paper challenges the assumption that the ethical work of informed consent is primarily completed at recruitment, and it highlights that interpretation and reuse of genomic data are organised through the whole federated system. This paper provides a conceptual and normative analysis of literature on informed consent in genomics and federated data sharing within federated infrastructures. This is to clarify how initial authorisation is implemented when the subsequent use of genomic data is structured by downstream institutional and technical arrangements. This article argues that federated genomic research distributes the implementation of consent. The conditions established through initial consent are implemented through downstream governance. Federated architecture distributes this work across multiple institutions. This distribution manifests in three ways: (1) the setting for assessing consent extends across multiple institutional decision points; (2) the function of consent includes constraining subsequent use within the authorised scope; and (3) interpretive authority is distributed among institutions that implement prior consent. Although federated architecture can help protect privacy, this paper also identifies possible adverse consequences of this distribution, including reduced understanding among participants, unclear institutional responsibility, and weaker alignment with participants’ reasons for contributing. The ethical defensibility of federated genomic research depends on informed consent being effective throughout the entire data lifecycle. Initial consent should clarify the scope and conditions for subsequent data use. This paper recommends that the federated genomic researchmodel should specify governance pathways for participant involvement, show how subsequent access decisions stay within prior consent, and provide responsive oversight for ethical uncertainties. Thus, informed consent can support ethically sound research if the federated programme stays within the scope of participant consent.