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Genetic Data Governance in Japanese Hospitals

Genetic Data Governance in Japanese Hospitals  The storage and access of genetic testing results have unique considerations for medical records. Initially, genetic testing was limited to patients with single gene diseases. Genetic medicine and testing have expanded, as have concerns about appropriately handling genetic information. In this study, we surveyed the management of genetic information in general hospitals in Japan using a questionnaire on access restrictions. Our questions included whether any other medical information was managed in a unique way. We identified 1037 hospitals designated for clinical training located throughout Japan and received responses from 258 hospitals, and 191 reported that they handle genetic information and results of genetic tests. Of the 191 hospitals that handle genetic information, 112 hospitals implement access restrictions to genetic information. Seventy-one hospitals, one of which uses paper medical records rather than electrical medical records, do not enforce access restrictions. For eight hospitals, it was not known whether access restrictions were enforced or not. The responses from these hospitals indicated that access restrictions and storage methods varied across institution type (e.g., general vs. university hospitals), institution size, and the presence of a clinical genetics department. Other information, such as infectious disease diagnosis, psychological counseling records, abuse, and criminal history, was also subject to access restriction in 42 hospitals. The disparity in how medical facilities handle sensitive genetic information demonstrates a need for discussion between medical professionals and the general public on the storage of sensitive records, including genetic information. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Asian Bioethics Review Springer Journals

Genetic Data Governance in Japanese Hospitals

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Publisher
Springer Journals
Copyright
Copyright © National University of Singapore and Springer Nature Singapore Pte Ltd. 2023. Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
ISSN
1793-8759
eISSN
1793-9453
DOI
10.1007/s41649-023-00242-9
Publisher site
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Abstract

 The storage and access of genetic testing results have unique considerations for medical records. Initially, genetic testing was limited to patients with single gene diseases. Genetic medicine and testing have expanded, as have concerns about appropriately handling genetic information. In this study, we surveyed the management of genetic information in general hospitals in Japan using a questionnaire on access restrictions. Our questions included whether any other medical information was managed in a unique way. We identified 1037 hospitals designated for clinical training located throughout Japan and received responses from 258 hospitals, and 191 reported that they handle genetic information and results of genetic tests. Of the 191 hospitals that handle genetic information, 112 hospitals implement access restrictions to genetic information. Seventy-one hospitals, one of which uses paper medical records rather than electrical medical records, do not enforce access restrictions. For eight hospitals, it was not known whether access restrictions were enforced or not. The responses from these hospitals indicated that access restrictions and storage methods varied across institution type (e.g., general vs. university hospitals), institution size, and the presence of a clinical genetics department. Other information, such as infectious disease diagnosis, psychological counseling records, abuse, and criminal history, was also subject to access restriction in 42 hospitals. The disparity in how medical facilities handle sensitive genetic information demonstrates a need for discussion between medical professionals and the general public on the storage of sensitive records, including genetic information.

Journal

Asian Bioethics Review – Springer Journals

Published: Mar 8, 2023

Keywords: Electronic medical record; Genomics; Genethics; Data governance; Data ethics; Japan

References

  • International declaration on human genetic data
    Abbing, H; UNESCO,
  • Japan’s initiative on rare and undiagnosed diseases (IRUD): Towards an end to the diagnostic odyssey
    Adachi, T; Kawamura, K; Furusawa, Y; Nishizaki, Y; Imanishi, N; Umehara, S; Izumi, K; Suematsu, M
  • Privacy rules for DNA databanks. Protecting coded “future diaries”
    Annas, GJ
  • Pre-symptomatic testing and confidentiality in the age of the electronic medical record
    Black, KJ; Barton, SK; Perlmutter, JS
  • Genetic testing in primary care
    Burke, W
  • Practical considerations to guide development of access controls and decision support for genetic information in electronic medical records
    Darcy, DC; Lewis, ET; Ormond, KE; Clark, DJ; Trafton, JA
  • Public and physician’s expectations and ethical concerns about electronic health record: Benefits outweigh risks except for information security
    Entzeridou, E; Markopoulou, E; Mollaki, V; V.
  • The Genetic Information Nondiscrimination Act (GINA): Public policy and medical practice in the age of personalized medicine
    Feldman, EA
  • Security and privacy in electronic health records: A systematic literature review
    Fernández-Alemán, JL; Señor, IC; Lozoya, PÁO; Toval, A
  • Privacy, confidentiality, security and patient safety concerns about electronic health records
    Issa, WB; Akour, IA; Ibrahim, A; Almarzouqi, A; Abbas, S; Hisham, F; Griffiths, J
  • Ethical considerations on pediatric genetic testing results in electronic health records
    Kanungo, S; Barr, J; Crutchfield, P; Fealko, C; Soares, N
  • Adopting electronic medical records in primary care: Lessons learned from health information systems implementation experience in seven countries
    Ludwick, DA; Doucette, J
  • Cancer genomic medicine in Japan
    Mano, H
  • Patient and public views about the security and privacy of electronic health records (EHRs) in the UK: Results from a mixed methods study
    Papoutsi, C; Reed, JE; Marston, C; Lewis, R; Majeed, A; Bell, D
  • Electronic health records: Current and future use
    Peters, SG; Khan, MA
  • Before it’s too late—addressing fear of genetic information
    Rothenberg, KH; Terry, SF
  • Genetic information and the workplace: Legislative approaches and policy challenges
    Rothenberg, K; Fuller, B; Rothstein, M; Duster, T; Kahn, MJE; Cunningham, R; Fine, B; Hudson, K; King, M-C; Murphy, P; Swergold, G; Collins, F
  • Future of electronic health records: Implications for decision support
    Rothman, B; Leonard, JC; Vigoda, MM
  • What is genetic discrimination, and when and how can it be prevented?
    Rothstein, MA; Anderlik, MR
  • Appropriate use of cancer comprehensive genome profiling assay using circulating tumor DNA
  • Can the revised “guidelines for genetic tests and diagnosis in medical practice” exterminate the spector of genetic exceptionalism over medical records?
    Suzuki, MY; Onuki, Y; Unzaki, A; Takeshita, K
  • Ethical concerns on sharing genomic data including patients’ family members
    Takashima, K; Maru, Y; Mori, S; Mano, H; Noda, T; Muto, K
  • To know or not to know: A review of behaviour and suicidal ideation in preclinical Huntington’s disease
    Wahlin, TBR
  • Japan’s government compensates leprosy patients for isolation policy
    Watts, J
  • Abortion in Japan
    Yamamoto, K; Yamamoto, Y; Hayase, T
  • The inclusion of genomic data in the 2015 revision of Japan’s Protection of Personal Information Act: Protection of wider range of genomic data as our next challenge
    Yamamoto, N; Fujita, T; Kawashima, M; Wittig, J; Suzuki, M; Kato, K