ArticleJournal of medical Internet research2026
Dissolution of Continuity of Ethical Governance in Data Science Health Research: Diagnostic and Response Framework for Lifecycle Oversight.
Article in Journal of medical Internet research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed.
- The Continuity Trap in Data Science Health Research.Journal of medical Internet research · 2026Article
- From Acceptable Profit to Fair Return: Operational Benefit-Sharing Models for Induced Pluripotent Stem Cell Research Using Legacy Samples from Low- and Middle-Income Countries.Research square · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
Traditional research ethics governance was designed 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. In this viewpoint, we use DSHR broadly to include research using large health datasets and adjacent secondary uses of health data, models, and biological materials, including learning health systems, public health surveillance, quality improvement, operations, commercial product development, and artificial intelligence (AI)-enabled translational uses that rely on health data or material lineages. We introduce 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 set of actors, instruments, or community processes can authorize, constrain, monitor, adjudicate, or remediate current use in relation to the persons and communities of origin. EGCD is distinct from consent staleness, function creep, contextual integrity violation, algorithmic drift, or a single defective data use agreement. It is the systemic condition in which several such failures together compromise the authority needed to govern current use. Building on our prior work on representational veracity and the continuity trap, we propose a diagnostic architecture that assesses six governance authority domains, applies three diagnostic criteria, scores each domain from 0 to 3 within a Continuity Authority Matrix (CAM), and stages severity from 0 to 4. We also propose an Ethical Continuity Governance and Response Mechanism (ECGRM) comprising a continuity registry, the CAM, trigger-based review, a Data Lifecycle Governance Officer function, a Continuity Dissolution Review Board, corrective and preventive action, cross-institutional audit, and community-governance integration. We use a publicly reported Royal Free-DeepMind Streams example to show how domain scores can identify stage 2 or 3 risk without converting the framework into a retrospective legal judgment. Implementation is proportionate, so these functions may operate within existing structures, particularly in underresourced institutions. The score and staging thresholds are conceptual triage aids, not validated metrics or automated determinations of ethical permissibility, and they require empirical validation and interrater reliability testing. Their purpose is to prevent the silent loss of governance authority while data, models, and biological materials continue to affect the lives, identities, and community standing of the persons and groups from whom they were derived. Lawful public health surveillance under a competent authority is a legitimate governance handoff, not EGCD; EGCD arises when authority is not transferred, traceable, accountable, or remediable. This viewpoint is addressed to research ethics committees and institutional review boards, data access committees, data stewards, biobank and registry leaders, AI governance teams, regulators, funders, community governance bodies, and investigators.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.