International Transfers of Health Research Data Following Schrems II: A Problem in Need of a Solution

Hallinan, Dara; Bernier, Alexander; Cambon‐Thomsen, Anne; Crawley, Francis P.; Dimitrova, Diana; Medeiros, Claudia Maria Bauzer; Nilsonne, Gustav; Parker, Simon C.; Pickering, Brian; Rennes, Stéphanie

doi:10.2139/ssrn.3688392

Cited by 2 publications

(1 citation statement)

References 18 publications

(7 reference statements)

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“…This list of justifications for cross-border transfer include adequacy decisions, bilateral or multilateral agreements, specific situations on the basis of consent, public interest, vital interest of the data subject and legitimate interests pursued by the controller not overridden by the interests or rights of the data subject. In the absence of the Privacy Shield or any other form of adequacy decision, data transfers from the EU to the United States can now happen only on the basis of the other justifications on the GDPR list (Hallinan et al, 2020) and with appropriate safeguards that are mostly regarded as complex processes.…”

Section: Data-related Governance Instrumentsmentioning

confidence: 99%

International data governance for neuroscience

Eke

Bernard

Bjaalie

et al. 2022

Neuron

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As neuroscience projects increase in scale and cross international borders, different ethical principles, national and international laws, regulations, and policies for data sharing must be considered. These concerns are part of what is collectively called data governance. Whereas neuroscience data transcend borders, data governance is typically constrained within geopolitical boundaries. An international data governance framework and accompanying infrastructure can assist investigators, institutions, data repositories, and funders with navigating disparate policies. Here, we propose principles and operational considerations for how data governance in neuroscience can be navigated at an international scale and highlight gaps, challenges, and opportunities in a global brain data ecosystem. We consider how to approach data governance in a way that balances data protection requirements and the need for open science, so as to promote international collaboration through federated constructs such as the International Brain Initiative (IBI). ll

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Section: Data-related Governance Instrumentsmentioning

confidence: 99%

International data governance for neuroscience

Eke

Bernard

Bjaalie

et al. 2022

Neuron

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Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group

et al. 2021

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The systemic challenges of the COVID-19 pandemic require cross-disciplinary collaboration in a global and timely fashion. Such collaboration needs open research practices and the sharing of research outputs, such as data and code, thereby facilitating research and research reproducibility and timely collaboration beyond borders. The Research Data Alliance COVID-19 Working Group recently published a set of recommendations and guidelines on data sharing and related best practices for COVID-19 research. These guidelines include recommendations for clinicians, researchers, policy- and decision-makers, funders, publishers, public health experts, disaster preparedness and response experts, infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations), and other potential users. These guidelines include recommendations for researchers, policymakers, funders, publishers and infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations). Several overarching themes have emerged from this document such as the need to balance the creation of data adherent to FAIR principles (findable, accessible, interoperable and reusable), with the need for quick data release; the use of trustworthy research data repositories; the use of well-annotated data with meaningful metadata; and practices of documenting methods and software. The resulting document marks an unprecedented cross-disciplinary, cross-sectoral, and cross-jurisdictional effort authored by over 160 experts from around the globe. This letter summarises key points of the Recommendations and Guidelines, highlights the relevant findings, shines a spotlight on the process, and suggests how these developments can be leveraged by the wider scientific community.

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International Transfers of Health Research Data Following Schrems II: A Problem in Need of a Solution

Cited by 2 publications

References 18 publications

International data governance for neuroscience

International data governance for neuroscience

Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group

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