The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data

Bannier, Élise; Barker, Gareth J.; Borghesani, Valentina; Broeckx, Nils; Clement, Patricia; Emblem, Kyrre E.; Ghosh, Samik; Glerean, Enrico; Gorgolewski, Krzysztof J.; Havu, Marko; Halchenko, Yaroslav; Herholz, Peer; Hespel, Anne; Heunis, Stephan; Hu, Yue; Chuan-Peng, Hu; Huijser, Dorien; Vayá, María de la Iglesia; Jančálek, Radim; Katsaros, Vasileios K.; Kieseler, Marie-Luise; Maumet, Camille; Moreau, Clara; Mutsaerts, Henk‐Jan; Oostenveld, Robert; Öztürk-Işık, Esin; Espinosa, Nicolas Pascual Leone; Pellman, John; Pernet, Cyril; Pizzini, Francesca Benedetta; Trbalic, A.; Toussaint, Paule-Joanne; Castello, Matteo Visconti di Oleggio; Wang, Fengjuan; Wang, Cheng; Zhu, Hua

doi:10.1002/hbm.25351

Cited by 31 publications

(22 citation statements)

References 18 publications

(18 reference statements)

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“…Truly informed consent requires that subjects be made aware that their data may be shared publicly, and that confidentiality cannot be absolutely guaranteed in the future. For this reason, we recommend that researchers planning to share their data via OpenNeuro use a consent form based on the Open Brain Consent (Bannier et al, 2021), which includes language that ensures subject awareness of the intent to share and its potential impact on the risk of participating. Of note, the Open Brain Consent has recently been adapted to include a data usage agreement that accommodates the European Union's General Data Protection Regulation (GDPR 2016/679); however, data collected in countries covered by GDPR cannot be shared through OpenNeuro at present due to the requirement for restrictive data use agreements that are not currently supported by OpenNeuro.…”

Section: Protecting Privacy and Confidentiality Of Datamentioning

confidence: 99%

The OpenNeuro resource for sharing of neuroscience data

Markiewicz

Gorgolewski

Feingold

et al. 2021

eLife

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197

128

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The sharing of research data is essential to ensure reproducibility and maximize the impact of public investments in scientific research. Here we describe OpenNeuro, a BRAIN Initiative data archive that provides the ability to openly share data from a broad range of brain imaging data types following the FAIR principles for data sharing. We highlight the importance of the Brain Imaging Data Structure (BIDS) standard for enabling effective curation, sharing, and reuse of data. The archive presently shares more than 600 datasets including data from more than 20,000 participants, comprising multiple species and measurement modalities and a broad range of phenotypes. The impact of the shared data is evident in a growing number of published reuses, currently totalling more than 150 publications. We conclude by describing plans for future development and integration with other ongoing open science efforts.

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Section: Protecting Privacy and Confidentiality Of Datamentioning

confidence: 99%

The OpenNeuro resource for sharing of neuroscience data

Markiewicz

Gorgolewski

Feingold

et al. 2021

eLife

Self Cite

197

128

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“…Neuroimaging researchers are open to data sharing and most have experience with sharing primary research data. Concerns regarding the protection of the privacy of participants from neuroimaging experiments and missing sections in consent forms to enable data sharing (cf 45. ) make researchers hesitant to share neuroimaging data.…”

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confidence: 99%

Survey on Open Science Practices in Functional Neuroimaging

Paret

Unverhau

Feingold

et al. 2021

Preprint

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Replicability and reproducibility of scientific findings is paramount for sustainable progress in neuroscience. Preregistration of the hypotheses and methods of an empirical study before analysis, the sharing of primary research data, and compliance with data standards such as the Brain Imaging Data Structure (BIDS), are considered effective practices to secure progress and to substantiate quality of research. We investigated the current level of adoption of open science practices in neuroimaging and the difficulties that prevent researchers from using them.Email invitations to participate in the survey were sent to addresses received through a PubMed search of human functional magnetic resonance imaging studies between 2010 and 2020. 283 persons completed the questionnaire.Although half of the participants were experienced with preregistration, the willingness to preregister studies in the future was modest. The majority of participants had experience with the sharing of primary neuroimaging data. Most of the participants were interested in implementing a standardized data structure such as BIDS in their labs. Based on demographic variables, we compared participants on seven subscales, which had been generated through factor analysis. It was found that experienced researchers at lower career level had higher fear of being transparent, researchers with residence in the EU had a higher need for data governance, and researchers at medical faculties as compared to other university faculties reported a higher need for data governance and a more unsupportive environment.The results suggest growing adoption of open science practices but also highlight a number of important impediments.

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“…There is a need to acknowledge and be responsive to the many different needs and socio-cultural and political dynamics that shape the diverse ethical principles and laws associated with data. Bannier et al, 2021). These tools will ensure that relevant information is available to the scientific community when they are planning an international project.…”

Section: Develop Principles For Idgmentioning

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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The Open Brain Consent: Informing research participants and obtaining consent to share brain imaging data

Cited by 31 publications

References 18 publications

The OpenNeuro resource for sharing of neuroscience data

The OpenNeuro resource for sharing of neuroscience data

Survey on Open Science Practices in Functional Neuroimaging

International data governance for neuroscience

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