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GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE.

Susan M C Gibbons¹, Jane Kaye

¹Dr Jane Kaye is a Research Officer with the Oxford Genetics Knowledge Park. She is based at the Ethox Centre, University of Oxford and is a principal investigator on a three-year project entitled "Governing Genetic Databases", funded under the Wellcome Trust's Biomedical Ethics programme (award ref: 076070/Z/04/Z). Dr Sue Gibbons is a Researcher in Law at the Ethox Centre, University of Oxford, and is undertaking legal research as part of that three-year project.

King'S Law Journal : KLJ

|October 9, 2008

Summary

This summary is machine-generated.

This paper introduces a collection on governing genetic databases, highlighting the need for clear legal frameworks in biomedical and forensic research. It addresses key issues like consent, data protection, and balancing individual versus public interests.

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Area of Science:

Genomics and Bioinformatics
Bioethics and Law
Forensic Science

Background:

The rapid expansion of genetic databases and genomic research presents complex challenges.
Existing legal and governance frameworks are often fragmented and lack coordination.
Biomedical and criminal forensic fields increasingly rely on genetic data.

Purpose of the Study:

To introduce a special symposium issue on governing genetic databases.
To provide context for the evolving scientific and legal landscape.
To identify and discuss cross-cutting themes in genetic database governance.

Main Methods:

Introduction to a collection of five related papers.
Synthesis of key issues and themes from the symposium papers.
Analysis of legal and ethical considerations in genetic data management.

Main Results:

Identified a lack of clear, coherent, or coordinated legal governance at national and international levels.
Highlighted critical themes including terminology, consent, and data protection.
Examined specific concerns related to population genetic databases (biobanks) and forensic databases.

Conclusions:

Effective governance of genetic databases requires addressing complex ethical, legal, and practical issues.
International harmonization and robust data protection are crucial for responsible genetic data use.
Balancing individual privacy with public good values is a central challenge in genetic database governance.