The Japanese government has become the first country to introduce laws to protect an individual’s genetic information. An individual’s genetic code is regarded as the ultimate form of personal information, containing one’s diathetic characteristics and likelihood of developing a disease. Genetic code analysis is identified through saliva or blood samples.
The Japanese government says because such information may lead to discrimination in, among other things, health insurance policies and employment opportunities, it should be protected as other forms of sensitive information are.
Under current Japanese law, organizations that acquire genetic codes must specify the exact purposes for which the data will be used. Most medical institutions also have in-house regulations regarding the use of genetic codes and utilize the information by keeping it completely separate from other forms of personal information.
Under the new laws, no sharing of any genetic data with a third party can take place without the person’s consent, nor can the data be linked to an individual’s name. The individual can only be referred to and identified by a code number or name.
The government’s decision follows September’s passing of the Revised Personal Information Protection Act. The revised law will come into full effect within two years and will be set under a government ordinance.
The government will be forming a panel of experts to ensure the law is implemented correctly and map out a draft for the government ordinance by the end of the year.
In the U.S. under the Genetic Information Nondiscrimination Act (GINA) of 2008, employers and health insurers cannot discriminate against individuals based upon their genetic information, but there are no laws which give this genetic information the level of protection the new Japanese laws will. This means that for example, hospitals and insurance companies can share this information amongst each other, without an individual’s specific consent.