Nearly all Japan’s genetic testing facilities mismanage patient info

Kyodo

Almost all of Japan’s medical facilities mismanage the genetic information of patients they check for genetic and chromosomal abnormalities as part of in vitro programs, a health ministry research group survey showed Saturday.

Of the 12 facilities surveyed, three do not clearly restrict access to the genetic data. In seven of them, the information is recorded in standard medical records that staff other than specialists can view, according to the Health, Welfare and Labor Ministry survey.

The 12 facilities, which were not identified by the research group, are believed to account for nearly all the medical centers conducting preimplantation genetic testing around the nation. In genetic testing, part of an ovum fertilized in vitro is examined to determine whether there are any gene variants that could cause serious illness or miscarriage.

The Japan Society of Obstetrics and Gynecology urges medical facilities to strictly control genetic data, describing it as a patient’s most sensitive personal information.

The 12 facilities’ management of genetic information is insufficient, the research group concluded, as is the way most of the facilities are run.

In addition, special counseling is necessary for patients who opt for the preimplantation genetic testing but only three of the medical facilities offered such a service both before and after the test. Nine of them offered counseling only prior to the test, according to the survey.

Yasunori Yoshimura, who heads the research group, said it is important for specialists to offer counseling to patients about the possibility of illness and how their children would grow up.

From 2006 to October 2012, a total of 211 couples opted for preimplantation genetic testing at the 12 facilities and 70 babies were born.