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

Shawn X. Dodd, Kiran Pohar Manhas, Stacey Page, Nicole Letourneau, Xinjie Cui, Suzanne Tough

2017

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 adult 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.

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Paper Citation


in Harvard Style

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


in Bibtex Style

@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},
}


in EndNote Style

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