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Authors: Shawn X. Dodd 1 ; Kiran Pohar Manhas 2 ; Stacey Page 2 ; Nicole Letourneau 3 ; Xinjie Cui 4 and Suzanne Tough 2

Affiliations: 1 Medical Sciences Graduate Program and University of Calgary, Canada ; 2 University of Calgary, Canada ; 3 Faculty of Nursing and University of Calgary, Canada ; 4 PolicyWise for Children & Families, Canada

ISBN: 978-989-758-255-4

Keyword(s): Governance, Privacy, Stakeholder Engagement, Child Data, Controlled Access, Vulnerable Populations.

Related Ontology Subjects/Areas/Topics: Data and Application Security and Privacy ; Data Engineering ; Data Integrity ; Data Management and Quality ; Data Privacy and Security ; Databases and Data Security ; Databases and Information Systems Integration ; Enterprise Information Systems ; Information and Systems Security ; Large Scale Databases ; Transparency in Research Data

Abstract: Research data abound and are increasingly shared through a variety of platforms, such as biobanks for precision health and data repositories for reuse of research and administrative data. Data sharing presents great opportunities as well as significant ethical and legal concerns, such as privacy, consent, governance, access, and communication. Respectful data governance calls for stakeholder engagement during platform development. This stakeholder-engagement study used a web-based survey to capture the views of research participants about governance strategies for secondary data use. Survey response rate was 60.8% (n = 346). Parents’ primary concern was ensuring appropriate data re-use of data, even over privacy. Appropriate re-use included project-specific access and limiting access to researchers with more-trusted affiliations like academia. Other affiliations (e.g. industry, government and not-for-profit) were less palatable. Parents considered pediatric data more sensitive than ad ult data and expressed more reluctance towards sharing child identifiers compared to their own (p-value<0.001). This study stresses the importance of repository governance strategies to sustain long-term access to valuable data assets via large-scale repository. (More)

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Paper citation in several formats:
Dodd, S.; Manhas, K.; Page, S.; Letourneau, N.; Cui, X. and Tough, S. (2017). Governance and Privacy in a Provincial Data Repository - A Cross-sectional Analysis of Longitudinal Birth Cohort Parent Participants’ Perspectives on Sharing Adult Vs. Child Research Data.In Proceedings of the 6th International Conference on Data Science, Technology and Applications - Volume 1: DATA, ISBN 978-989-758-255-4, pages 208-215. DOI: 10.5220/0006430802080215

@conference{data17,
author={Shawn X. Dodd. and Kiran Pohar Manhas. and Stacey Page. and Nicole Letourneau. and Xinjie Cui. and Suzanne Tough.},
title={Governance and Privacy in a Provincial Data Repository - A Cross-sectional Analysis of Longitudinal Birth Cohort Parent Participants’ Perspectives on Sharing Adult Vs. Child Research Data},
booktitle={Proceedings of the 6th International Conference on Data Science, Technology and Applications - Volume 1: DATA,},
year={2017},
pages={208-215},
publisher={SciTePress},
organization={INSTICC},
doi={10.5220/0006430802080215},
isbn={978-989-758-255-4},
}

TY - CONF

JO - Proceedings of the 6th International Conference on Data Science, Technology and Applications - Volume 1: DATA,
TI - Governance and Privacy in a Provincial Data Repository - A Cross-sectional Analysis of Longitudinal Birth Cohort Parent Participants’ Perspectives on Sharing Adult Vs. Child Research Data
SN - 978-989-758-255-4
AU - Dodd, S.
AU - Manhas, K.
AU - Page, S.
AU - Letourneau, N.
AU - Cui, X.
AU - Tough, S.
PY - 2017
SP - 208
EP - 215
DO - 10.5220/0006430802080215

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