JMIR Publications

ABSTRACT

Background:

Traditional research ethics governance was built for bounded protocols, identifiable investigators, and temporally limited encounters with human participants. Data science health research (DSHR) disrupts that architecture because health data, biological materials, computational representations, and models persist, travel, combine, and acquire new uses across time. The ethical problem is not simply that individual instruments such as consent forms, IRB approvals, data access agreements, model cards, or privacy notices become outdated. It is that, across the lifecycle, the authorities that make these instruments ethically meaningful may lose jurisdiction, standing, evidentiary force, or remedial control. Conceptual contribution: This paper introduces Ethical Governance Continuity Dissolution (EGCD): the progressive and sometimes irreversible loss of domain-specific governance authority across a data, model, or biological-material lineage, such that no coherent assemblage of actors, instruments, rules, or community processes can any longer authorize, constrain, monitor, adjudicate, or remediate current use. EGCD differs from consent staleness, function creep, contextual integrity violations, algorithmic drift, and the continuity trap because it names the systemic condition in which several such failures become mutually reinforcing. Framework: Building on prior work on representational veracity and the continuity trap, we develop a six-domain authority taxonomy, diagnostic criteria, staging categories, and a prototype Ethical Continuity Dissolution Score. We then propose an Ethical Continuity Governance and Response Mechanism consisting of a continuity registry, continuity authority matrix, trigger-based lifecycle review, a Data Lifecycle Governance Officer, a Continuity Dissolution Review Board, cross-institutional audits, and community governance integration. Implications: EGCD provides a practical vocabulary and governance architecture for diagnosing and managing the loss of ethical governance continuity in global DSHR. The goal is not to freeze all original consent conditions indefinitely, but to prevent silent loss of governance authority as data, models, and biological materials move through increasingly complex research and translational ecosystems.