ReviewJournal of the American Medical Informatics Association : JAMIA2018
The role of ethics in data governance of large neuro-ICT projects.
Review in Journal of the American Medical Informatics Association : JAMIA, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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
9 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled it
- A framework for health information governance: a scoping review.Health research policy and systems · 2024Article
- Time to consider animal data governance: perspectives from neuroscience.Frontiers in neuroinformatics · 2023Article
- Towards an understanding of global brain data governance: ethical positions that underpin global brain data governance discourse.Frontiers in big data · 2023Article
- International data governance for neuroscience.Neuron · 2022Review
- Why Is the Electronic Health Record So Challenging for Research and Clinical Care?Methods of information in medicine · 2021Article
- The case for information fiduciaries: The implementation of a data ethics checklist at Seattle Children's Hospital.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- Beyond Research Ethics: Dialogues in Neuro-ICT Research.Frontiers in human neuroscience · 2019Article
- Responsible Data Governance of Neuroscience Big Data.Frontiers in neuroinformatics · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Objective: We describe current practices of ethics-related data governance in large neuro-ICT projects, identify gaps in current practice, and put forward recommendations on how to collaborate ethically in complex regulatory and normative contexts. Methods: We undertake a survey of published principles of data governance of large neuro-ICT projects. This grounds an approach to a normative analysis of current data governance approaches. Results: Several ethical issues are well covered in the data governance policies of neuro-ICT projects, notably data protection and attribution of work. Projects use a set of similar policies to ensure users behave appropriately. However, many ethical issues are not covered at all. Implementation and enforcement of policies remain vague. Conclusions: The data governance policies we investigated indicate that the neuro-ICT research community is currently close-knit and that shared assumptions are reflected in infrastructural aspects. This explains why many ethical issues are not explicitly included in data governance policies at present. With neuro-ICT research growing in scale, scope, and international involvement, these shared assumptions should be made explicit and reflected in data governance.
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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.