A marathon, not a sprint - neuroimaging, Open Science and ethics.
| Title: | A marathon, not a sprint - neuroimaging, Open Science and ethics. |
|---|---|
| Authors: | Beauvais MJS; Centre of Genomics and Policy, Faculty of Medicine, McGill University, Canada. Electronic address: michael.beauvais@mcgill.ca.; Knoppers BM; Centre of Genomics and Policy, Faculty of Medicine, McGill University, Canada.; Illes J; Neuroethics Canada, Division of Neurology, Department of Medicine, University of British Columbia, Canada. Electronic address: jilles@mail.ubc.ca. |
| Source: | NeuroImage [Neuroimage] 2021 Aug 01; Vol. 236, pp. 118041. Date of Electronic Publication: 2021 Apr 20. |
| Publication Type: | Journal Article; Research Support, Non-U.S. Gov't |
| Language: | English |
| Journal Info: | Publisher: Academic Press Country of Publication: United States NLM ID: 9215515 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1095-9572 (Electronic) Linking ISSN: 10538119 NLM ISO Abbreviation: Neuroimage Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: Orlando, FL : Academic Press, c1992- |
| MeSH Terms: | Biomedical Research*/ethics ; Biomedical Research*/standards ; Neuroimaging*/ethics ; Neuroimaging*/standards ; Bioethics* ; Intersectoral Collaboration* ; Privacy*; Brain/*diagnostic imaging; Community-Based Participatory Research/ethics ; Community-Based Participatory Research/standards ; Humans ; Incidental Findings ; Information Dissemination |
| Abstract: | 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.; (Copyright © 2021. Published by Elsevier Inc.) |
| Grant Information: | Canada CIHR |
| Contributed Indexing: | Keywords: Data governance; Neuroethics; Neuroimaging; Open Science; Research ethics |
| Entry Date(s): | Date Created: 20210413 Date Completed: 20211027 Latest Revision: 20211027 |
| Update Code: | 20260130 |
| DOI: | 10.1016/j.neuroimage.2021.118041 |
| PMID: | 33848622 |
| Database: | MEDLINE |
Journal Article; Research Support, Non-U.S. Gov't