A marathon, not a sprint – neuroimaging, Open Science and ethics
•Global opportunities for sharing of brain data through major international initiatives draw upon and may come to exceed domestic initiatives.•Respect for individuals and communities, appropriate consent models, privacy protections, participatory research design, contextual integrity, fusion of clin...
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Veröffentlicht in: | NeuroImage (Orlando, Fla.) Fla.), 2021-08, Vol.236, p.118041-118041, Article 118041 |
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Format: | Artikel |
Sprache: | eng |
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Zusammenfassung: | •Global opportunities for sharing of brain data through major international initiatives draw upon and may come to exceed domestic initiatives.•Respect for individuals and communities, appropriate consent models, privacy protections, participatory research design, contextual integrity, fusion of clinical and research goals, and appropriate management of incidental findings are key factors in the success of and public trust in an open science paradigm for neuroimaging.•Intersectoral partnerships with the life sciences and humanities, and active engagement with participant and patient communities, will help to mitigate the increasing responsibilities that neuroimagers will shoulder as the revolution in brain data sharing unfolds.
Open Science is calling for a radical re-thinking of existing scientific practices. Within the neuroimaging community, Open Science practices are taking the form of open data repositories and open lab notebooks. The broad sharing of data that accompanies Open Science, however, raises some difficult ethical and legal issues. With neuroethics as a focusing lens, we explore eight central concerns posed by open data with regard to human brain imaging studies: respect for individuals and communities, concern for marginalized communities, consent, privacy protections, participatory research designs, contextual integrity, fusions of clinical and research goals, and incidental findings. Each consideration assists in bringing nuance to the potential benefits for open data sharing against associated challenges. We combine current understandings with forward-looking solutions to key issues. We conclude by underscoring the need for new policy tools to enhance the potential for responsible open data. |
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ISSN: | 1053-8119 1095-9572 |
DOI: | 10.1016/j.neuroimage.2021.118041 |