Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison Article Swipe
Ruth Horn
,
Jennifer Merchant
,
Marion Abecassis
,
Mark Bale
,
Hervé Chneiweiss
,
Nina Hallowell
,
Angeliki Kerasidou
,
Anneke Lucassen
,
Jonathan Montgomery
,
Michael Parker
,
Christine Patch
,
Eva C. Winkler
·
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.1038/s41431-022-01247-y
YOU?
·
· 2022
· Open Access
·
· DOI: https://doi.org/10.1038/s41431-022-01247-y
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/citizens and medicine/science, and on each party’s rights and duties towards each other. Our geographic scope of comparative analysis includes initiatives underway in England (Genomics England), France (Plan France Médecine Génomique) and Germany (German Human Genome-Phenome Archive). We discuss existing as well as future challenges raised by large-scale health data collection and management in each country. We conclude that the prospects of improving individualised patient healthcare as well as contributing to the scientific and research prosperity of any given nation engaged in health data collection, storage and processing are undeniable. However, we also attempt to demonstrate that biomedical data requires careful management, and transparent and accountable governance structures that are clearly communicated to patients/participants and citizens. Furthermore, when third parties partake as stakeholders, transparent consent protocols relative to data access and use come centre stage, and patient benefits must clearly outweigh commercial interests. Finally, any cross-border data transfer needs to be carefully managed to address incoherencies between regional, national, and supranational regulations and recommendations.
Related Topics
Concepts
Data sharing
Data governance
Corporate governance
Prosperity
Public relations
Health care
Scale (ratio)
Bioethics
Phenome
Confidentiality
Political science
Business
Medicine
Law
Marketing
Data quality
Geography
Biology
Finance
Phenotype
Pathology
Cartography
Alternative medicine
Biochemistry
Gene
Metric (unit)
Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1038/s41431-022-01247-y
- https://www.nature.com/articles/s41431-022-01247-y.pdf
- OA Status
- hybrid
- Cited By
- 12
- References
- 22
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4311290745
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4311290745Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1038/s41431-022-01247-yDigital Object Identifier
- Title
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Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparisonWork title
- Type
-
articleOpenAlex work type
- Language
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enPrimary language
- Publication year
-
2022Year of publication
- Publication date
-
2022-12-06Full publication date if available
- Authors
-
Ruth Horn, Jennifer Merchant, Marion Abecassis, Mark Bale, Hervé Chneiweiss, Nina Hallowell, Angeliki Kerasidou, Anneke Lucassen, Jonathan Montgomery, Michael Parker, Christine Patch, Eva C. WinklerList of authors in order
- Landing page
-
https://doi.org/10.1038/s41431-022-01247-yPublisher landing page
- PDF URL
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https://www.nature.com/articles/s41431-022-01247-y.pdfDirect link to full text PDF
- Open access
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YesWhether a free full text is available
- OA status
-
hybridOpen access status per OpenAlex
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https://www.nature.com/articles/s41431-022-01247-y.pdfDirect OA link when available
- Concepts
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Data sharing, Data governance, Corporate governance, Prosperity, Public relations, Health care, Scale (ratio), Bioethics, Phenome, Confidentiality, Political science, Business, Medicine, Law, Marketing, Data quality, Geography, Biology, Finance, Phenotype, Pathology, Cartography, Alternative medicine, Biochemistry, Gene, Metric (unit)Top concepts (fields/topics) attached by OpenAlex
- Cited by
-
12Total citation count in OpenAlex
- Citations by year (recent)
-
2025: 4, 2024: 5, 2023: 3Per-year citation counts (last 5 years)
- References (count)
-
22Number of works referenced by this work
- Related works (count)
-
10Other works algorithmically related by OpenAlex
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