ArticleEuropean journal of human genetics : EJHG2015
International Charter of principles for sharing bio-specimens and data.
Article in European journal of human genetics : EJHG, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 63 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
63 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Responsible data sharing in international health research: a systematic review of principles and norms.BMC medical ethics · 2019Pooled it
- Paediatric biobanking in the era of precision medicine: ethical, regulatory, and scientific challenges from childhood to adulthood.European journal of pediatrics · 2026Review
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Communicating clearly about data sharing in genomics.Human genomics · 2025Review
- Sharing Data and Transferring Samples Within Pediatric Clinical Studies: How to Overcome Challenges and Make Them a Science Opportunity.Healthcare (Basel, Switzerland) · 2024Article
- Applying Findable, Accessible, Interoperable, and Reusable Principles to Biospecimens and Biobanks.Biopreservation and biobanking · 2024Article
- Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance.European journal of pediatrics · 2024Review
- Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants.Frontiers in medicine · 2024Article
- Computer-Aided Drug Design and Drug Discovery: A Prospective Analysis.Pharmaceuticals (Basel, Switzerland) · 2023Review
- Overcoming ethical and legal obstacles to data linkage in health research: stakeholder perspectives.International journal of population data science · 2023Article
- Sharing, reuse, and storage of biosamples among biomedical researchers in Jordan: Practice and concerns.PloS one · 2022Article
- Individual notions of fair data sharing from the perspectives of Swiss stakeholders.BMC health services research · 2021Article
- A framework for ethics review of applications to store, reuse and share tissue samples.Monash bioethics review · 2021Article
- Artificial intelligence in cancer research: learning at different levels of data granularity.Molecular oncology · 2021Review
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Digital pathology and computational image analysis in nephropathology.Nature reviews. Nephrology · 2020Review
- South Africa's new standard material transfer agreement: proposals for improvement and pointers for implementation.BMC medical ethics · 2020Article
- Ethical, legal, and social issues (ELSI) in rare diseases: a landscape analysis from funders.European journal of human genetics : EJHG · 2020Article
- Legal and ethical framework for global health information and biospecimen exchange - an international perspective.BMC medical ethics · 2020Article
- A Distributed Whole Genome Sequencing Benchmark Study.Frontiers in genetics · 2020Article
3 more citing papers are in PubMed but not listed here.
Corrections and comments
- Commented on by
- Erratum issued
Authors and funding
12 authors.
Funding
Abstract
There is a growing international agreement on the need to provide greater access to research data and bio-specimen collections to optimize their long-term value and exploit their potential for health discovery and validation. This is especially evident for rare disease research. Currently, the rising value of data and bio-specimen collections does not correspond with an equal increase in data/sample-sharing and data/sample access. Contradictory legal and ethical frameworks across national borders are obstacles to effective sharing: more specifically, the absence of an integrated model proves to be a major logistical obstruction. The Charter intends to amend the obstacle by providing both the ethical foundations on which data sharing should be based, as well as a general Material and Data Transfer Agreement (MTA/DTA). This Charter is the result of a careful negotiation of different stakeholders' interest and is built on earlier consensus documents and position statements, which provided the general international legal framework. Further to this, the Charter provides tools that may help accelerate sharing. The Charter has been formulated to serve as an enabling tool for effective and transparent data and bio-specimen sharing and the general MTA/DTA constitutes a mechanism to ensure uniformity of access across projects and countries, and may be regarded as a consistent basic agreement for addressing data and material sharing globally. The Charter is forward looking in terms of emerging issues from the perspective of a multi-stakeholder group, and where possible, provides strategies that may address these issues.
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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.