The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities
In this paper, we provide an overview and analysis of the BRAIN Initiative data-sharing ecosystem. First, we compare and contrast the characteristics of the seven BRAIN Initiative data archives germane to data sharing and reuse, namely data submission and access procedures and aspects of interoperab...
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eLife Sciences Publications Ltd
2024-11-01
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| Online Access: | https://elifesciences.org/articles/94000 |
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| author | Sudhanvan Iyer Kathryn Maxson Jones Jill O Robinson Nicole R Provenza Dominique Duncan Gabriel Lázaro-Muñoz Amy L McGuire Sameer A Sheth Mary A Majumder |
| author_facet | Sudhanvan Iyer Kathryn Maxson Jones Jill O Robinson Nicole R Provenza Dominique Duncan Gabriel Lázaro-Muñoz Amy L McGuire Sameer A Sheth Mary A Majumder |
| author_sort | Sudhanvan Iyer |
| collection | DOAJ |
| description | In this paper, we provide an overview and analysis of the BRAIN Initiative data-sharing ecosystem. First, we compare and contrast the characteristics of the seven BRAIN Initiative data archives germane to data sharing and reuse, namely data submission and access procedures and aspects of interoperability. Second, we discuss challenges, benefits, and future opportunities, focusing on issues largely specific to sharing human data and drawing on N = 34 interviews with diverse stakeholders. The BRAIN Initiative-funded archive ecosystem faces interoperability and data stewardship challenges, such as achieving and maintaining interoperability of data and archives and harmonizing research participants’ informed consents for tiers of access for human data across multiple archives. Yet, a benefit of this distributed archive ecosystem is the ability of more specialized archives to adapt to the needs of particular research communities. Finally, the multiple archives offer ample raw material for network evolution in response to the needs of neuroscientists over time. Our first objective in this paper is to provide a guide to the BRAIN Initiative data-sharing ecosystem for readers interested in sharing and reusing neuroscience data. Second, our analysis supports the development of empirically informed policy and practice aimed at making neuroscience data more findable, accessible, interoperable, and reusable. |
| format | Article |
| id | doaj-art-f98523a02ecf480b966b2f1600e55495 |
| institution | Kabale University |
| issn | 2050-084X |
| language | English |
| publishDate | 2024-11-01 |
| publisher | eLife Sciences Publications Ltd |
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| series | eLife |
| spelling | doaj-art-f98523a02ecf480b966b2f1600e554952025-01-16T16:09:31ZengeLife Sciences Publications LtdeLife2050-084X2024-11-011310.7554/eLife.94000The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunitiesSudhanvan Iyer0https://orcid.org/0009-0003-0744-9441Kathryn Maxson Jones1https://orcid.org/0000-0001-8268-0422Jill O Robinson2https://orcid.org/0000-0002-0487-304XNicole R Provenza3https://orcid.org/0000-0002-6952-5417Dominique Duncan4https://orcid.org/0000-0002-6154-9262Gabriel Lázaro-Muñoz5https://orcid.org/0000-0003-1933-9453Amy L McGuire6https://orcid.org/0000-0002-7819-519XSameer A Sheth7https://orcid.org/0000-0001-8770-8965Mary A Majumder8https://orcid.org/0000-0002-5025-3618Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, United States; Department of History, Purdue University, West Lafayette, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, United StatesDepartment of Neurosurgery, Baylor College of Medicine, Houston, United StatesLaboratory of Neuro Imaging, USC Stevens Neuroimaging and Informatics Institute, Keck School of Medicine of USC, University of Southern California, Los Angeles, United StatesCenter for Bioethics, Harvard Medical School, Boston, United States; Department of Psychiatry, Massachusetts General Hospital, Boston, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, United StatesDepartment of Neurosurgery, Baylor College of Medicine, Houston, United StatesCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, United StatesIn this paper, we provide an overview and analysis of the BRAIN Initiative data-sharing ecosystem. First, we compare and contrast the characteristics of the seven BRAIN Initiative data archives germane to data sharing and reuse, namely data submission and access procedures and aspects of interoperability. Second, we discuss challenges, benefits, and future opportunities, focusing on issues largely specific to sharing human data and drawing on N = 34 interviews with diverse stakeholders. The BRAIN Initiative-funded archive ecosystem faces interoperability and data stewardship challenges, such as achieving and maintaining interoperability of data and archives and harmonizing research participants’ informed consents for tiers of access for human data across multiple archives. Yet, a benefit of this distributed archive ecosystem is the ability of more specialized archives to adapt to the needs of particular research communities. Finally, the multiple archives offer ample raw material for network evolution in response to the needs of neuroscientists over time. Our first objective in this paper is to provide a guide to the BRAIN Initiative data-sharing ecosystem for readers interested in sharing and reusing neuroscience data. Second, our analysis supports the development of empirically informed policy and practice aimed at making neuroscience data more findable, accessible, interoperable, and reusable.https://elifesciences.org/articles/94000BRAIN initiativedata sharingdata archivesneuroethicspolicy |
| spellingShingle | Sudhanvan Iyer Kathryn Maxson Jones Jill O Robinson Nicole R Provenza Dominique Duncan Gabriel Lázaro-Muñoz Amy L McGuire Sameer A Sheth Mary A Majumder The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities eLife BRAIN initiative data sharing data archives neuroethics policy |
| title | The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities |
| title_full | The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities |
| title_fullStr | The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities |
| title_full_unstemmed | The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities |
| title_short | The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities |
| title_sort | brain initiative data sharing ecosystem characteristics challenges benefits and opportunities |
| topic | BRAIN initiative data sharing data archives neuroethics policy |
| url | https://elifesciences.org/articles/94000 |
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