The Yomiuri Shimbun reports:
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.
So companies were allowed to open their doors and collect such highly sensitive information with inadequate privacy controls in place? And now it’s not clear whether data have been retained or who has any data?
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Sixteen companies could not be confirmed as still in operation or withdrawn from the industry, and of this number nine were found to have no official registration as a corporation.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.
Read more on Yomiuri Shimbun.