Oversight of genomic data sharing : what roles for ethics and data access committees?
- Author
- Mahsa Shabani (UGent) , Edward Dove, Madeleine Murtagh, Bartha Knoppers and Pascal Borry
- Organization
- Abstract
- Discussions regarding responsible genomic data sharing often center around ethical and legal issues such as the consent, privacy, and confidentiality of individuals, families, and communities. To ensure the ethical grounds of genomic data sharing, oversight by both research ethics and Data Access Committees (DACs) across the research lifecycle is warranted. In this article, we review these oversight practices and argue that they reveal a compelling need to clarify the scope of ethical considerations by oversight bodies and to delineate core elements such as "objectionable" data uses. Ethical oversight of genomic data sharing would be considerably improved if the relevant ethical considerations by research ethics and DACs were coordinated. We therefore suggest several mechanisms to achieve greater clarification of ethical considerations by these committees, as well as greater communication and coordination between both to ensure robust and sustained ethical oversight of genomic data sharing.
- Keywords
- data access committees, data sharing, ethics committees, governance, oversight
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Citation
Please use this url to cite or link to this publication: http://hdl.handle.net/1854/LU-8630039
- MLA
- Shabani, Mahsa, et al. “Oversight of Genomic Data Sharing : What Roles for Ethics and Data Access Committees?” BIOPRESERVATION AND BIOBANKING, vol. 15, no. 5, 2017, pp. 469–74, doi:10.1089/bio.2017.0045.
- APA
- Shabani, M., Dove, E., Murtagh, M., Knoppers, B., & Borry, P. (2017). Oversight of genomic data sharing : what roles for ethics and data access committees? BIOPRESERVATION AND BIOBANKING, 15(5), 469–474. https://doi.org/10.1089/bio.2017.0045
- Chicago author-date
- Shabani, Mahsa, Edward Dove, Madeleine Murtagh, Bartha Knoppers, and Pascal Borry. 2017. “Oversight of Genomic Data Sharing : What Roles for Ethics and Data Access Committees?” BIOPRESERVATION AND BIOBANKING 15 (5): 469–74. https://doi.org/10.1089/bio.2017.0045.
- Chicago author-date (all authors)
- Shabani, Mahsa, Edward Dove, Madeleine Murtagh, Bartha Knoppers, and Pascal Borry. 2017. “Oversight of Genomic Data Sharing : What Roles for Ethics and Data Access Committees?” BIOPRESERVATION AND BIOBANKING 15 (5): 469–474. doi:10.1089/bio.2017.0045.
- Vancouver
- 1.Shabani M, Dove E, Murtagh M, Knoppers B, Borry P. Oversight of genomic data sharing : what roles for ethics and data access committees? BIOPRESERVATION AND BIOBANKING. 2017;15(5):469–74.
- IEEE
- [1]M. Shabani, E. Dove, M. Murtagh, B. Knoppers, and P. Borry, “Oversight of genomic data sharing : what roles for ethics and data access committees?,” BIOPRESERVATION AND BIOBANKING, vol. 15, no. 5, pp. 469–474, 2017.
@article{8630039,
abstract = {{Discussions regarding responsible genomic data sharing often center around ethical and legal issues such as the consent, privacy, and confidentiality of individuals, families, and communities. To ensure the ethical grounds of genomic data sharing, oversight by both research ethics and Data Access Committees (DACs) across the research lifecycle is warranted. In this article, we review these oversight practices and argue that they reveal a compelling need to clarify the scope of ethical considerations by oversight bodies and to delineate core elements such as "objectionable" data uses. Ethical oversight of genomic data sharing would be considerably improved if the relevant ethical considerations by research ethics and DACs were coordinated. We therefore suggest several mechanisms to achieve greater clarification of ethical considerations by these committees, as well as greater communication and coordination between both to ensure robust and sustained ethical oversight of genomic data sharing.}},
author = {{Shabani, Mahsa and Dove, Edward and Murtagh, Madeleine and Knoppers, Bartha and Borry, Pascal}},
issn = {{1947-5535}},
journal = {{BIOPRESERVATION AND BIOBANKING}},
keywords = {{data access committees,data sharing,ethics committees,governance,oversight}},
language = {{eng}},
number = {{5}},
pages = {{469--474}},
title = {{Oversight of genomic data sharing : what roles for ethics and data access committees?}},
url = {{http://doi.org/10.1089/bio.2017.0045}},
volume = {{15}},
year = {{2017}},
}
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