Conceptual Paper (preprint)
Date Posted: 17th April 2026
Journal: JMIR Preprints
Title: Dissolution of Continuity of Ethical Governance in Data Science Health Research: A Diagnostic and Response Framework for Lifecycle Oversight
Link to article:
https://preprints.jmir.org/preprint/99980
Dissolution of Continuity of Ethical Governance in Data Science Health Research: A Diagnostic and Response Framework for Lifecycle Oversight
Traditional research ethics governance was designed for a different era — bounded studies, identifiable investigators, and time-limited interactions with research participants. Data science health research breaks that model: health data, biological materials, computational models, and their derivatives persist, combine, travel across institutions, and acquire new uses that their original governance instruments were never designed to address. The problem is not simply that consent forms or IRB approvals become outdated. It is that, over a data or model’s lifecycle, the very authorities that give those instruments ethical meaning — their jurisdiction, standing, evidentiary force, and remedial reach — can quietly erode or disappear entirely.
This paper introduces Ethical Governance Continuity Dissolution (EGCD) to describe this progressive and sometimes irreversible loss of governance authority. Building on the team’s prior work on representational veracity and the continuity trap, we developed a six-domain authority taxonomy, diagnostic staging criteria, and a prototype scoring tool, alongside a proposed governance response mechanism that includes a continuity registry, lifecycle review triggers, a Data Lifecycle Governance Officer role, and a Continuity Dissolution Review Board. The goal is not to lock research indefinitely to its original consent conditions, but to prevent governance authority from silently disappearing as data and models move through increasingly complex research ecosystems.
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