Abstract
In Japan, there is no special law for the comprehensive utilization of personal data in the medical field, and a comprehensive legal system has been lacking for decades. This paper examines the background and issues of the cancer registration law specific to cancer and the legal structure of medical information in Japan and points out that one of the problems that has become clear in dealing with COVID-19 is the difficulty of handling the complicated system of anonymously processed information and the difficulty of using it for the purpose. The report also points out that the Medical Big Data Law, which is also based on the premise of anonymous use, has a complex mechanism in addition to that of the Personal Information Protection Law. A system to certify certification bodies and other protection measures will be introduced yesterday, but before examining the specifics of anonymization, it is necessary to establish a fundamental system that enables the use of more basic information in a way that can be easily understood by healthcare professionals. In conclusion, this paper points out that in the future, while protecting personal information, it will be useful to reorganize it into a special law that is easier to understand from a comprehensive point of view, and to construct a law that makes medical information available to contribute to medical research and development, to reduce the increase in medical costs.
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Notes
- 1.
Japan’s Kantei (the prime minister’s official residence) website, The Healthcare Policy and The New System of Medical R&D, https://www.kantei.go.jp/jp/singi/kenkouiryou/en/pdf/doc1.pdf.
- 2.
Fumio Shimpo, The revised Japanese Personal Information Protection Act and the utilization of Big Data from Medical Records, Igaku no Ayumi, vol. 259, No. 7, at 787–791. See also, George Shishido, ‘Personal Information Protection Law and Privacy: For the Cross-linking of Medical Affairs Law and Information Law (Records of the 48 Annual Meeting of the Medical Affairs Law Society) – (Symposium Frontier of Medical Information), Medical Law (34), at 87–96, (2019).
- 3.
Shimpo, above note 2, at 790–791.
- 4.
Shimpo, above note 2, at 789–791.
- 5.
It is also described a Next Generation Medical Infrastructure Bill.
- 6.
Kaori Ishii, Present and Future of Personal Data Protection Law, Keiso Shobo Publishing, 2017, pp. 443–452.
- 7.
Ishii, above note 6, pp. 443–452. See also, Kaori Ishii, Masahiro Sogabe, Ryoji Mori ed., Commentar for Personal Information Protection Law, Keiso Shobo publishing, 2021, pp. 654–705.
- 8.
Ishii, above note 6, pp. 443–452.
- 9.
Ishii, above note 6, pp. 443–452.
- 10.
Shizuo Fujiwara, George Shishido, Background and Future of the 2020 Revision of the Personal Information Protection Law, Jurist 1551, Nov 2020, pp. 14–29., Personal Information Protection Commission website,
The revised Personal Information Protection Act of 2021.
(Review of the Personal Information Protection System through the Public and Private Sectors) (https://www.ppc.go.jp/personalinfo/minaoshi/).
- 11.
Tomomi Hioki, Yoichiro Itakura, ‘Structure of the Personal Information Protection Law’ Shoji Homu Publishing, 2017, p. 104.
- 12.
Article 2, sentence 3 of Act on Protection of Personal Data, and Article 2 of the Order for the Act on Protection of Personal Data.
- 13.
Above note 2, Shishido, ‘Future and Present of Information Law’ at 175.
- 14.
Act No. 111 of 2013, hereinafter referred to as “Cancer Registration Act.
- 15.
The number one death rate in Japan is “cancer” and statistics show that one in two people will have cancer at least once in their lifetime, so the existence of such a database has its own side.
- 16.
The purpose of this Act is, in light of the current situation where cancer is a serious problem for the lives and health of the people, such as that cancer is the largest cause of death due to the disease of the people, to improve the quality of medical care for cancer (Refers to the improvement of the quality of cancer medical care and cancer screening (Hereinafter referred to as “Cancer treatment, etc.”) and the promotion of cancer prevention. The same shall apply hereinafter.), enhance the provision of information on cancer, medical care for cancer, etc. and prevention of cancer, and implement other cancer measures based on scientific knowledge, in accordance with the purpose of the Basic Act on Cancer Control (Act No. 98 of 2006), by stipulating matters concerning the implementation of the National Cancer Registration and the use, provision, and protection of information pertaining to the implementation of the National Cancer Registration, as well as matters concerning the promotion of in-hospital cancer registration, etc., and stipulating the utilization of information obtained through cancer registration, etc., to promote understanding and analysis of the status of cancer, medical care, outcomes, etc. and other cancer research and studies, thereby contributing to further enhancement of cancer measures.
- 17.
Group leader was Eiji Maruyama, Professor, Graduate School of Law, Kobe University.
- 18.
Katsunori Kai, “Regional Cancer Registration Law System and Criminal Regulations: Focusing on Legislative Proposals” Waseda Law Review, Vol. 83, No. 4 (2008), p. 36.
- 19.
Act No. 98 of June 23, 2006.
- 20.
Act on Promotion of Cancer Registration (Act No. 111 of December 13, 2013).
- 21.
Graphic of the website of the Japan Cancer Registration Association “What is cancer registration?”.
- 22.
Next Generation Medical Infrastructure Bill.
- 23.
Ministry of Health, Labour and Welfare, Study Group on the Protection of Personal Information at Medical Institutions Report, Report on the Utilization of Information in the Medical and Other Fields and the Establishment of an Environment for Protection, http://www.mhlw.go.jp/stf/shingi/2r9852000002k0gy-att/2r9852000002k0kz.pdf. At page 6–10 of the report, it is analyzed that accumulated anonymously processed data could be utilized in order to contribute to the improvement of medical care that enables the quality of medical service to be improved.
- 24.
The Working Group for Adjustment of the Medical Information Handling System of the Council for Next-Generation Medical ICT Infrastructure, summarized on December 27, 2016 http://www.soumu.go.jp/main_content/000462278.pdf.
- 25.
Article8 A person who performs anonymously processed medical information preparation work (limited to juridical persons.) may, upon application, receive approval from the competent minister to the effect that it is recognized that the person is capable of conducting anonymously processed medical information preparation work properly and reliably.
The present law provides a framework for the recognition of a so-called recognition organization, but it does not specify in detail what kind of information is collected and how it can be used by the recognition organization. These parts depend on future operation.
- 26.
Of the provisions of the relevant bills, the following are particularly important is Article 2.
The term “anonymously processed medical information” as used in this Act means information about an individual that is obtained by processing medical information so that a specific individual cannot be identified by taking the measures specified in the following items according to the categories of medical information listed in those items and so that the medical information cannot be restored:
(i) Medical information falling under Paragraph 1, Item (i): Delete a part of the description contained in the medical information (Including the replacement of a part of the description, etc. with another description, etc. by a method without regularity that can restore the description, etc.).
(ii) Medical information falling under Paragraph 1, Item (ii): To delete all of the Individual Identification Codes included in the applicable medical institution (Including replacing the said personal identification code with other descriptions etc. by a method having no regularity capable of restoring the said personal identification code.). See also, Ishii, Sogabe, Mori ed., above note 7, pp. 954–977.
- 27.
Article 89 of the Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation).
- 28.
Mayu Terada, Public Law on Advanced Technology and Regulation, Keiso shobo publishing 2020, pp. 46–70. See also, Ishii, Sogabe, Mori ed., above note 7, pp. 954–977.
- 29.
Paragraph 2 of Article 89.
- 30.
Paragraph 4 b of Article 14 and paragraph 3 b of Article 17.
- 31.
Paragraph 4 b of Article 14.
- 32.
Ibid.
- 33.
U.S. Department of Health & Human Services, Your Rights Under HIPAA, https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html.
- 34.
- 35.
- 36.
Ibid.
- 37.
Cabinet Order enacted on January 28, 2020, Cabinet decision on revision of entry restriction, etc. decided on March 26, 2020.
- 38.
Basic Policy for Countermeasures against Novel Coronavirus Infection (March 28, 2020 (Changed on April 16, 2020): Decision of the New Coronavirus Infection Control Center in Japan).
- 39.
It is explained as ‘Avoid the Three Cs’. Government explained that particularly common contributory factors in outbreaks as “Closed spaces with poor ventilation,” “Crowded spaces with many people nearby,” and “Close-contact settings such as close-range conversations”. See, https://www.mhlw.go.jp/stf/covid-19/kenkou-iryousoudan_00006.html.
- 40.
In Japan, because of the universal health insurance system, anyone can basically access low-cost, high-quality medical care at any time. However, because there is no spare capacity and limited medical resources to deal with infectious diseases that require special systems, such as coronavirus infection, the Ministry of Health, Labour and Welfare decided to call on the government to minimize the number of infected people in order to reduce the number of people accessing medical institutions. The Ministry of Health, Labour and Welfare website: Plan to Secure a System for Providing Health and Medical Care for COVID-19, https://www.mhlw.go.jp/stf/seisakunitsuite/newpage_00056.html.
- 41.
Prefectural governors, etc. may “When deeming it necessary for preventing the outbreak of an Infectious Disease or for clarifying the status, progress, and cause of the outbreak of an Infectious Disease, the prefectural governor may direct relevant officials to question the patients, Suspected Disease Carriers or Asymptomatic Carriers of a Class I Infectious Disease, a Class II Infectious Disease, a Class III Infectious Disease, a Class IV Infectious Disease, a Class V Infectious Disease or a Novel Influenza Infection, etc., a person with symptoms of a New Infectious Disease, the owners or managers of animals that are likely to transmit an Infectious Disease to humans, or other persons concerned, or to conduct necessary investigations.” (Article 15, paragraph (1) of said Act, an aggressive epidemiological survey. Paragraph 8 of the same article reports to the Minister of Health, Labour and Welfare. Paragraph 2 of the same article in the case of the Minister of Health, Labour and Welfare).
- 42.
See Fig. 1.
- 43.
See Fig. 2.
- 44.
Act No. 59 of 2003. Hereinafter referred to as Act on the Protection of Personal Information Held by Incorporated Administrative Agencies, etc.
- 45.
See above note 7, Ishii, Sogabe, Mori ed., Commentar for Personal Information Protection Law, pp. 19–26. See also, In the field of academic research.
Principles of the Rules for the Protection of Personal Information.
(Revised Personal Information Protection Act of 2021) (https://www.ppc.go.jp/files/pdf/210623_gakujutsu_kiritsunokangaekata.pdf).
- 46.
Shimpo, above note 2, pp. 790–791.
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Terada, M. (2022). Possible Utilization of Personal Data and Medical Care in Japan, Focusing on Japan’s Act on Anonymously Processed Medical Information to Contribute to Medical Research and Development. In: Kreps, D., Davison, R., Komukai, T., Ishii, K. (eds) Human Choice and Digital by Default: Autonomy vs Digital Determination. HCC 2022. IFIP Advances in Information and Communication Technology, vol 656. Springer, Cham. https://doi.org/10.1007/978-3-031-15688-5_7
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