Cargando…

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...

Descripción completa

Detalles Bibliográficos
Autores principales: Stahl, Bernd Carsten, Rainey, Stephen, Harris, Emma, Fothergill, B Tyr
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2018
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
_version_ 1783344988294217728
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
work_keys_str_mv AT stahlberndcarsten theroleofethicsindatagovernanceoflargeneuroictprojects
AT raineystephen theroleofethicsindatagovernanceoflargeneuroictprojects
AT harrisemma theroleofethicsindatagovernanceoflargeneuroictprojects
AT fothergillbtyr theroleofethicsindatagovernanceoflargeneuroictprojects
AT stahlberndcarsten roleofethicsindatagovernanceoflargeneuroictprojects
AT raineystephen roleofethicsindatagovernanceoflargeneuroictprojects
AT harrisemma roleofethicsindatagovernanceoflargeneuroictprojects
AT fothergillbtyr roleofethicsindatagovernanceoflargeneuroictprojects