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The Regulation of Human Genetic Databases in Japan

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Author(s): Gerard Porter

Journal: SCRIPT-ed
ISSN 1744-2567

Volume: 1;
Issue: 3;
Start page: 449;
Date: 2004;
Original page

ABSTRACT
Regulators drafting the legal and ethical framework of the UK Biobank Project are attempting to achieve a complex and delicate balance of interests. The regulatory structure which they devise must maximise the usefulness of the Biobank as a long-term resource for a variety of population-based genetic studies. At the same time, regulators must also strive to protect the rights and dignity of the donors of genetic material on whose highly-sensitive information this research will be based. When weighing the various competing interests, it may be useful to observe the ways in which other jurisdictions have attempted to regulate human genetic databases- to analyse the successes and problems of their regulatory frameworks and see how behaviour has evolved in those countries in practice. Viewed in this spirit, Japan may prove to be a valuable and informative case study in the regulation of human biobanks.
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