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Practical guidelines addressing ethical issues pertaining to the curation of human locus-specific variation databases
Sue Povey1, Aida I Al Aqeel, Anne Cambon-Thomsen
1Department of Genetics, Evolution and Environment, University College London, London, United Kingdom. s.povey@ucl.ac.uk
Human Mutation
|August 5, 2010
Summary
New ethical guidelines address sharing genetic variation data from locus-specific databases (LSDBs). These guidelines aim to facilitate global data access for managing genetic disorders while respecting privacy and ethical considerations.
Area of Science:
- Genetics
- Bioethics
- Bioinformatics
Background:
- Over 1,000 locus-specific variation databases (LSDBs) exist, linking phenotype to genotype.
- Unpublished genetic data in diagnostic labs could aid genetic disorder management.
- Sharing this data globally presents significant ethical challenges.
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