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The role of ethics in data governance of large neuro-ICT projects
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 princip...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077829/ https://www.ncbi.nlm.nih.gov/pubmed/29767726 http://dx.doi.org/10.1093/jamia/ocy040 |
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author | Stahl, Bernd Carsten Rainey, Stephen Harris, Emma Fothergill, B Tyr |
author_facet | Stahl, Bernd Carsten Rainey, Stephen Harris, Emma Fothergill, B Tyr |
author_sort | Stahl, Bernd Carsten |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-6077829 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-60778292018-08-09 The role of ethics in data governance of large neuro-ICT projects Stahl, Bernd Carsten Rainey, Stephen Harris, Emma Fothergill, B Tyr J Am Med Inform Assoc Review 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. Oxford University Press 2018-05-14 /pmc/articles/PMC6077829/ /pubmed/29767726 http://dx.doi.org/10.1093/jamia/ocy040 Text en © The Author(s) 2018. Published by Oxford University Press on behalf of the American Medical Informatics Association. http://creativecommons.org/licenses/by-nc/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com |
spellingShingle | Review Stahl, Bernd Carsten Rainey, Stephen Harris, Emma Fothergill, B Tyr The role of ethics in data governance of large neuro-ICT projects |
title | The role of ethics in data governance of large neuro-ICT projects |
title_full | The role of ethics in data governance of large neuro-ICT projects |
title_fullStr | The role of ethics in data governance of large neuro-ICT projects |
title_full_unstemmed | The role of ethics in data governance of large neuro-ICT projects |
title_short | The role of ethics in data governance of large neuro-ICT projects |
title_sort | role of ethics in data governance of large neuro-ict projects |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077829/ https://www.ncbi.nlm.nih.gov/pubmed/29767726 http://dx.doi.org/10.1093/jamia/ocy040 |
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