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Japan univ. doctor sent genetic data on 1,300 lung cancer patients to acquaintance

Juntendo University is seen in Tokyo's Chiyoda Ward on May 28, 2023. (Mainichi/Hiroyuki Harada)

TOKYO -- A doctor at Juntendo University sent data containing the names and genetic information of some 1,300 lung cancer patients to a man outside the institution in 2021, the Mainichi Shimbun has learned.

    The Tokyo-based university has admitted to the Mainichi that the action by the doctor, then a graduate school student, violated in-house rules. She had had created an electronic file containing the patients' information without anonymizing the data before emailing it to the man, who was not a co-researcher. No leaks of data beyond the man have been confirmed outside the university.

    According to the man, the woman had already acquired a doctor's license at the time and was researching the relation between lung cancer and genetic mutation as a pathology major. The electronic file she created contained 200 items of information per patient, including their name, age, history of smoking, the size of tumors and their characteristics, the surgical techniques employed, their family cancer history, and whether there was genetic mutation that had to do with the growth of their cancer.

    The woman sent the electronic file to the man, also a doctor, and asked him to perform statistical analysis of the data in January 2021. The man accepted her request as she told him that his name would be cited as a co-author in her academic paper.

    However, when the man checked with Juntendo University at the end of 2021, it turned out that the paper she submitted did not contain his name. Her supervisor also was not aware of his cooperation in the research. The university told the man that the woman's handling of the data was inappropriate and that she "deserved a strong warning."

    Upon inquiry from the Mainichi Shimbun, the university explained that under its internal rules data must be anonymized before being used in research so patients are not identified. "That the woman sent the data in a state where individual subjects could be identified violated our in-house rules, and it's quite regrettable," the school commented.

    The university revealed that it had instructed the woman to withdraw her dissertation that was still pending, but stopped short of clarifying whether it had punished her. The institution has not taken any other responses such as reporting the incident to the patients listed in the file in question, on the grounds that "it is hard to imagine that the data has been leaked to a large number of unspecified parties."

    When reached by the Mainichi via phone in September 2022, the woman, then working as an assistant at the university, responded, "I will get back after looking into a response." She has not returned to be interviewed since then.

    (Japanese original by Hiroyuki Harada, Digital News Group, and Mikako Shimogiri, Lifestyle, Science & Environment News Department)

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