J.Jpn. Surg. Soc.. 118(3): 305-311, 2017

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Feature topic

PERSONAL （GENE-RELATED） INFORMATION

In September 2015, the Act on the Protection of Personal Information was revised. Under that revision, some new technical terms, such as “individual identification code” and “special care-required personal information,” were introduced. Genome data is one individual identification code, and personal information that includes genomic data is part of special care-required personal information. There are strict regulations, for example, on obtaining informed consent in principle before acquiring special care-required personal information, and therefore information including genomic data must be handled very carefully. Along with the revision of Act on the Protection of Personal Information, guidelines for medical staff are being revised to help them understand how to deal with the new items of personal information. Some ethical guidelines for medical and health research are also being revised. For example, due to the individual identification codes or special care-required personal information, the technical terms and methods for obtaining informed consent are under review. The revised law will come into effect on May 30, 2017, and trends in guideline revision should be watched carefully.

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