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Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison

Abstract:

This article reports on the findings of an international workshop organised by the UK-France Genomics and Ethics Network (UK-FR GENE) in 2021. They focus specifically on how collection, storage and sharing of genomic data may pose challenges to established principles and values such as trust, confidentiality, and privacy in countries that have implemented, or are about to implement, large-scale national genomic initiatives. These challenges impact the relationships between patients/citizen...

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Publication status:
Published
Peer review status:
Peer reviewed

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Publisher copy:
10.1038/s41431-022-01247-y

Authors


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Institution:
University of Oxford
Division:
MSD
Department:
Nuffield Department of Population Health
Role:
Author
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Role:
Author
ORCID:
0000-0001-7192-7282

Contributors

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Name:
Wellcome Trust
Grant:
203132/Z/16/Z
More from this funder
Name:
Economic and Social Research Council
Grant:
ES/T00908X/1
Publisher:
Springer
Journal:
European Journal of Human Genetics More from this journal
Volume:
31
Issue:
2
Pages:
142-147
Publication date:
2022-12-06
Acceptance date:
2022-11-15
DOI:
EISSN:
1476-5438
ISSN:
1018-4813
Language:
English
Keywords:
Pubs id:
1311558
Local pid:
pubs:1311558
Deposit date:
2022-12-06

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