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Conceptualizing fairness in the secondary use of health data for research : a scoping review
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- Journal Article
- A1
- open access
Reconciling the biomedical data commons and the GDPR : three lessons from the EUCAN ELSI collaboratory
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- Conference Paper
- C3
- open access
Conceptualizing fairness in the secondary use of health data for research : a scoping review
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Genomic data as a national strategic resource : implications for the genomic commons and international data sharing for biomedical research and innovation
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From collected stamps to hair locks : ethical and legal implications of testing DNA found on privately owned family artifacts
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- Journal Article
- A1
- open access
Reward systems for cohort data sharing : an interview study with funding agencies
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- Miscellaneous
- open access
The European health data space : too big to succeed?
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Will the European Health Data Space change data sharing rules?
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Building a better mobile app marketplace : a legal and governance toolkit for app mediated genomics research
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- Journal Article
- A2
- open access
Lawfulness in secondary use of health data
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- Journal Article
- A1
- open access
Credit and recognition for contributions to data-sharing platforms among cohort holders and platform developers in Europe : interview study
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Policies to regulate data sharing of cohorts via data infrastructures : an interview study with funding agencies
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Data sharing platforms : instruments to inform and shape science policy on data sharing?
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- Miscellaneous
- open access
The Data Governance Act and the EU's move towards facilitating data sharing
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- Journal Article
- A2
- open access
Collection and sharing of genomic and health data for research purposes : going beyond data collection in traditional research settings
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- Journal Article
- A1
- open access
Factors that influence data sharing through data sharing platforms : a qualitative study on the views and experiences of cohort holders and platform developers
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Data sharing in biomedical sciences : a systematic review of incentives
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- Book Chapter
- open access
The impact of the GDPR on the governance of biobank research
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- Book Chapter
- open access
Data Access Governance
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Het uitwisselen van onderzoeksgegevens : belangen en barrières
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- Miscellaneous
- open access
Editorial: Personal genomes : accessing, sharing, and interpretation
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- Journal Article
- A1
- open access
Ethics review of big data research : what should stay and what should be reformed?
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- Journal Article
- A2
- open access
An agenda-setting paper on data sharing platforms : euCanSHare workshop
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Toward better governance of human genomic data
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- Journal Article
- A1
- open access
Public involvement in the governance of populationlevel biomedical research : unresolved questions and future directions
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Data sharing platforms and the academic evaluation system
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- Miscellaneous
- open access
Reporting, recording, and communication of COVID-19 cases in workplace : data protection as a moving target
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Review of policies of companies and databases regarding access to customers' genealogy data for law enforcement purposes
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Juridisch onderzoek gegevensbeheer Zorginspectie
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- Journal Article
- A1
- open access
Genomic sequencing capacity, data retention, and personal access to raw data in Europe
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- Book Chapter
- open access
Implications of secondary findings in clinical context
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Blockchain-based platforms for genomic data sharing : a de-centralized approach in response to the governance problems?
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- Conference Paper
- C3
- open access
Governance of collection, use and storage of RWD in the view of data protection concerns
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Transparency and objectivity in governance of clinical trials data sharing : current practices and approaches
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Re‐identifiability of genomic data and the GDPR : assessing the re‐identifiability of genomic data in light of the EU general Data Protection Regulation
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- Journal Article
- A1
- open access
DNA data marketplace : an analysis of the ethical concerns regarding the participation of the individuals
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The use of samples originating from doping control procedures for research purposes : a qualitative study
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- Journal Article
- A1
- open access
Model consent clauses for rare disease research
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Are requirements to deposit data in research repositories compatible with the European Union's general data protection regulation?
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Consent insufficient for data release
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Variant data sharing by clinical laboratories through public databases : consent, privacy and further contact for research policies
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Forensic epigenetic age estimation and beyond : ethical and legal considerations
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- Miscellaneous
- open access
Umbilical cord blood banking, research and clinical applications : report and recommendations
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- Journal Article
- A2
- open access
The challenges of the expanded availability of genomic information : an agenda-setting paper
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Registered access : authorizing data access
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Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation
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Raw genomic data : storage, access, and sharing
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Research ethics review for the use of anonymized samples and data : a systematic review of normative documents
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Genetic testing in Europe : an overview of the legal framework
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Oversight of genomic data sharing : what roles for ethics and data access committees?
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'You want the right amount of oversight' : interviews with data access committee members and experts on genomic data access
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Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts
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Registered access : a ‘Triple-A’ approach
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Research ethics : ethics review for international data-intensive research : ad hoc approaches mix and match existing components
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- Journal Article
- A2
- open access
Challenges of web-based personal genomic data sharing
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Genomic databases, access review, and data access committees
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- Miscellaneous
- open access
From the principles of genomic data sharing to the practices of data access committees
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- Journal Article
- A1
- open access
Controlled access under review : improving the governance of genomic data access
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Compendium of policy and ethical framework Umbilical Cord Blood (UCB) : banking, research and clinical Applications
(2015) -
Attitudes of research participants and the general public towards genomic data sharing : a systematic literature review
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- Journal Article
- A2
- open access
Is there a right time to know? The right not to know and genetic testing in children
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- Journal Article
- A1
- open access
A review of the key issues associated with the commercialization of biobanks
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Nonpropositional content in direct-to-consumer genetic testing advertisements