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Locus-specific databases: from ethical principles to practice
Richard G H Cotton1, Clémentine Sallée, Bartha M Knoppers
1Genomic Disorders Research Centre, Melbourne, Australia. cotton@unimelb.edu.au
Human Mutation
|September 21, 2005
Summary
Locus-specific databases (LSDBs) are crucial for genetic research and patient care. This paper reviews ethical principles and proposes practical guidelines for LSDB curators managing sensitive patient data online.
Area of Science:
- Genetics and Bioinformatics
- Bioethics
- Clinical Data Management
Background:
- Locus-specific databases (LSDBs) are vital for clinical care and research, hosting anonymized patient mutation data online.
- The increasing volume of ethical and legal regulations impacts the essential transmission of clinical data for patient management and research.
- Balancing data sharing with privacy is a key challenge in genomic medicine.
Framework:
- Review of international ethical principles relevant to Locus-specific databases.
- Analysis of existing ethical guidelines and legal requirements impacting data sharing.
- Identification of core ethical considerations for genomic data curation.
Implementation:
- Proposal of 12 practical guidelines for LSDB curators.
- Focus on translating ethical principles into actionable data collection practices.
- Guidance for ethical data management in clinical research settings.
Implications:
- Facilitating responsible data sharing for improved diagnostics and treatments.
- Enhancing the utility of LSDBs in clinical research and patient care.
- Providing a foundational framework for ethical LSDB curation and data governance.