ArticleBioethics2025
The Ethics of Informed Consent for Data Registries: Moving Beyond Moral Minimalism to the High Ground.
Article in Bioethics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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
1 citing paper in PubMed.
- The digital transformation of clinical teaching: a review of AI and data-driven quality assurance systems in medical education.Frontiers in public health · 2026Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
There is a rapid increase in disease registries all over the world, propelled by innovations in electronic health records and computer technologies. Unlike the developed world, where many registries are well established, many disease registries in the developing world are still in their incipient stage. Establishment of disease registries is blighted by many ethical concerns. These include but are not limited to data capture and data transfer happening without explicit patient consent; data sharing with third parties for various purposes including research, policy making and advocacy; and retrospective consent waiver. This is compounded by the lack of ethical guidelines and international best practices. This paper presents an ethical analysis of the ethics of informed consent for data registries.
Indexed as
Identifiers
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.