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40% of genetic test firms gone, missing

The Yomiuri Shimbun

The Yomiuri Shimbun Of 87 companies in Japan confirmed by the government to be engaged in genetic testing services in fiscal 2012, a total of 29 had stopped operating, mainly due to bankruptcy, as of January this year, The Yomiuri Shimbun has learned.

With the situation of 10 other companies unknown, concerns have emerged over the management of genetic information, described as “the ultimate personal information,” by 39 companies, or more than 40 percent of the total.

Deeming the lack of strict legal regulations on the genetic testing business to be a serious issue, the government has launched investigations to ascertain the state of the industry.

What is being called into question is not the testing conducted by medical institutions, but that conducted by companies in which customers send in saliva and other samples and receive test results.

All human genetic information, or the human genome, was decoded in 2003, and since then technological progress has lowered the cost of testing to several tens of thousands of yen per test.

IT companies and others have entered the genetic testing market one after another.

In fiscal 2012 a survey commissioned by the Economy, Trade and Industry Ministry found there were 87 companies engaged in the business.

Many companies have promoted their services on the internet through such statements as, “You can learn your risk of developing cancer and other diseases” or “You can determine if your children have talent in sports or music.” Many had private-sector institutions conduct the actual tests, and compiled reports based on results of those tests for their customers.

Checks conducted by The Yomiuri Shimbun in December and January found that 42 companies, or about half of fiscal 2012 total, were in operation. However, 29 companies had withdrawn from the industry.

There are no regulations for companies about the erasure or disposal of genetic information after they withdraw from the business. The Yomiuri Shimbun found that one company still preserved data on several thousand people and another had paper files.

Sixteen companies could not be confirmed as still in operation or withdrawn from the industry, and of this number nine were found to have no official registration as a corporation. The location and contact information of one company were not confirmed.

The other six companies could be reached, but they declined to respond.

According to the National Consumer Affairs Center of Japan, the center had received 365 complaints about genetic testing businesses as of January last year. Some said they became unable to reach the companies providing genetic information testing services. In one case, a person claimed to have received different results for the same sample that was sent twice. The center said it continues to receive similar complaints.

The Japanese Association of Medical Sciences expressed their view in 2012 that the credibility of genetic businesses was questionable. As there currently exist only voluntary rules set by industry organizations, a government advisory panel referred to the necessity of securing certain scientific levels in testing and proper management of information when it compiled a relevant report last autumn.

Following this move, a research team of the Health, Labor and Welfare Ministry has been investigating the state of the industry.

Hisamichi Okamura, a lawyer who is an expert on the protection of personal information, said: “The misuse of genetic information could lead to discrimination in employment or marriage. The revised Personal Information Protection Law, which will come into effect in May, stipulates the obligation for a company to make efforts to delete unnecessary information as soon as possible. It is also necessary to establish a system in which companies’ information management can be checked by a third party.”Speech

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