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| Item Type: | Review |
|---|---|
| Title: | The role of ethics in data governance of large neuro-ICT projects |
| Creators Name: | Stahl, B.C. and Rainey, S. and Harris, E. and Fothergill, B.T. |
| Abstract: | OBJECTIVE: We describe current practices of ethics-related data governance in large neuro-ICT projects, identify gaps in current practice, and put forward recommendations on how to collaborate ethically in complex regulatory and normative contexts. METHODS: We undertake a survey of published principles of data governance of large neuro-ICT projects. This grounds an approach to a normative analysis of current data governance approaches. RESULTS: Several ethical issues are well covered in the data governance policies of neuro-ICT projects, notably data protection and attribution of work. Projects use a set of similar policies to ensure users behave appropriately. However, many ethical issues are not covered at all. Implementation and enforcement of policies remain vague. CONCLUSIONS: The data governance policies we investigated indicate that the neuro-ICT research community is currently close-knit and that shared assumptions are reflected in infrastructural aspects. This explains why many ethical issues are not explicitly included in data governance policies at present. With neuro-ICT research growing in scale, scope, and international involvement, these shared assumptions should be made explicit and reflected in data governance. |
| Keywords: | Data Governance, Neuroscience, ICT, Ethics |
| Source: | Journal of the American Medical Informatics Association |
| ISSN: | 1067-5027 |
| Publisher: | Oxford University Press |
| Volume: | 25 |
| Number: | 8 |
| Page Range: | 1099-1107 |
| Date: | August 2018 |
| Official Publication: | https://doi.org/10.1093/jamia/ocy040 |
| PubMed: | View item in PubMed |
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