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Gdańskie Studia Azji Wschodniej

Prawne aspekty badań genomicznych i biobankowania w regionie Azji Wschodniej

Data publikacji: 21.12.2022

Gdańskie Studia Azji Wschodniej, 2022, Zeszyt 22, s. 24 - 41

https://doi.org/10.4467/23538724GS.22.037.17009

Autorzy

Karol Gregorczuk
Uniwersytet Gdański
ul. Bażyńskiego 1a 80-952 Gdańsk, Polska
https://orcid.org/0000-0002-2700-1578 Orcid
Wszystkie publikacje autora →

Abstrakt

Legal aspects of genomics research and biobanking in the East Asia region

The contemporary development of science and technology in the field of biomedicine has influenced the development of innovative research tools in modern diagnostics and therapies. Many Asian countries are currently interested in genetic research and biobanks, in response to increasing competitiveness on the global biotechnology market. Establishing of a modern research infrastructure in China, Japan, and South Korea is essential for future research on the etiology of genetic diseases and the development of effective methods of their treatment. Undertaking concerted legislative work is a response to numerous challenges related to the collection, processing, and sharing of biological material and related genetic information. The main problems in the field of genetic research and biobanks are the concept of informed consent, the protection of genetic data, and the commercialization of genetic material. Bio-law in China, Japan, and South Korea is the result of the search for consensus between protecting the fundamental rights of individuals and the freedom of research.

Bibliografia

Billings P.R., Kohn M.A., Cuevas M. de et al., Discrimination as a Consequence of Genetic Testing, „American Journal of Human Genetic” 1992, vol. 50.

Chen H., Chan B., Joly Y., Privacy and biobanking in China: a case of policy in transition, „Journal of Law, Medicine & Ethics” 2015, vol. 43, issue 4.

Cheng L., Shi Ch., Wang X., Li Q., Wan Q., Yan Z., Zhang Y., Chinese biobanks: present and future, „Genetics Research” 2014, vol. 95(6).

Cho S.Y., Hong E.J., Nam J., Han B., Chu Ch., Park O., Opening of the National Biobank of Korea as the Infrastructure of Future Biomedical Science in Korea, „Osong Public Health and Research Perspectives” 2012, vol. 3, issue 3.

Cotter A., Marsh D., Japan-China co-operation in 2018, https://www.omfif.org/2018/01/japan-china-co-operation-in-2018/ (dostęp: 6.01.2022).

Du L., Rachul Ch., A brief review on informed consent laws in China, „Health Law Review” 2013, vol. 21(2).

Du L., Wang M., Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services [w:] Personal Genomes: Accessing, Sharing, and Interpretation, eds. M. Corpas, S. Beck, G. Glusman, Lausanne 2021.

Fan R., A Confucian view of informed consent in biomedical practice [w:] Cross-Cultural and Religious Critiques of Informed Consent, eds. J. Tham, A.G. Gómez, M.D. Garasic, Abingdon – New York 2022.

Finkin M.W., Krause R., Takeuchi-Okuno H., Employee autonomy, privacy, and dignity under technological oversight [w:] Comparative Labor Law, eds. M.W. Finkin, G. Mundlak, Cheltenham – Northampton 2015.

Gan R., Wang H., Song Y., Fan J., Xiong Y., Chinese Biobanking Initiatives [w:] Biobanking of Human Biospecimens Principles and Practice, eds. P. Hainaut, J. Vaught, K. Zatloukal, M. Pasterk, Cham (Switzerland) 2017.

Greenleaf G., Asian Data Privacy Laws: Trade & Human Rights Perspectives, Oxford 2014.

Kim H., Ho C.W.L., Ho Ch.-H. et al., Genetic discrimination: introducing the Asian perspective to the debate, „npj Genomic Medicine” 2021, vol. 6, no. 54.

Kocki J., Czop M., Antosz H., Choroby genetyczne człowieka [w:] Propedeutyka genetyki dla studentów uczelni medycznych, red. A. Filip, J. Kocki, Lublin 2014.

Konstytucja Chińskiej Republiki Ludowej, przekład z j. chińskiego Wu Lan, M. Dargas, Gdańsk 2012.

Konstytucja Republiki Korei, przekład z j. koreańskiego A. Diniejko, wprowadzenie M.M. Wiszowaty, Gdańsk 2015.

Lee S., Jung P.E., Lee Y., Publicly-funded biobanks and networks in East Asia, „SpringerPlus” 2016, no. 5, art. 1080.

Leflar L.B., Informed consent and Patients’ Rights in Japan: 2001 Epilogue, https://www.academia.edu/3335605/Informed_Consent_and_Patients_Rights_in_Japan_2001_Epilogue (dostęp: 26.11.2022).

Lock M., Globalization and cultures of biomedicine [w:] Medicine Across Cultures: History and Practice of Medicine in Non-Western Cultures, vol. 3, ed. H. Selin, Dordrecht 2003.

Macer D.R.J., Regional Perspectives in Bioethics: Japan [w:] Annals of Bioethics: Regional Perspectives in Bioethics, eds. M.J. Cherry, J.F. Peppin, Routledge [b.m.] 2003.

Marcén A.G., The New Persona Data Protection in Japan: Is It Enough? [w:] Media Technologies for Work and Play in East Asia: Critical Perspectives on Japan and the Two Koreas, eds. L. Micky, Ch. Peichi, Bristol 2021.

Miyashita H., The evolving concept of data privacy in Japanese law, „International Data Privacy Law”, November 2011, vol. 1, issue 4.

Park K.B., South Korea – Data Protection Overview, https://www.dataguidance.com/notes/south-korea-data-protection-overview (dostęp: 21.11.2022).

Pawlikowski J., Biobankowanie ludzkiego materiału biologicznego dla celów badań naukowych – aspekty organizacyjne, etyczne i społeczne, Lublin 2012.

Ramsay M., The Human Genome [w:] Molecular Medicine for Clinicians, eds. B. Mendelow, N. Chetty, Johannesburg 2009.

Solomon E., Berg L., Martin D., Ville C.A., Biologia, tłum. zbiorowe, Warszawa 2000.

Stelmach J., Brożek B., Soniewicka M., Załuski W., Paradoksy bioetyki prawniczej, Warszawa 2010.

Triendl R., Millenium money for Japanese scientists, „Nature Medicine” 1999, vol. 5, no. 10.

Triendl R., Gottweis H., Governance by stealth Large-scale pharmacogenomics and biobanking in Japan [w:] Biobanks Governance in comparative perspective, eds. H. Gottweis, A. Petersen, London – New York 2008.

Wang Y., Lu D., Chung Y.-J., Xu S., Genetic structure, divergence and admixture of Han Chinese, Japanese and Korean populations, „Hereditas” 2018, vol. 155, issue 19.

Warren S.D., Brandeis L.D., Right to privacy, „Hardward Law Review”, December 1890.

Yamamoto N., Fujita T., Kawashima M., Wittig J., Suzuki M., Kato K., 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, „Journal of Human Genetics” 2018, vol. 63.

Yoshizawa G., Ho C.W.L., Zhu W. et al., ELSI practices in genomic research in East Asia: Implications for research collaboration and public participation, „Genome Medicine” 2014, vol. 6(39).

Yoshizawa G., Sasongko T.H., Ho C.-H., Kato K., Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond, „Frontiers in Genetics” 2017, vol. 8(99).

Zhang E.Y., Informed consent. A critical response from a Buddhist perspective [w:] Cross-Cultural and Religious Critiques of Informed Consent, eds. J. Tham, A.G. Gómez, M.D. Garasic, Abingdon – New York 2022.

Informacje

Informacje: Gdańskie Studia Azji Wschodniej, 2022, s. 24 - 41

Typ artykułu: Oryginalny artykuł naukowy

Tytuły:

Angielski:

Legal aspects of genomics research and biobanking in the East Asia region

Autorzy

https://orcid.org/0000-0002-2700-1578

Karol Gregorczuk
Uniwersytet Gdański
ul. Bażyńskiego 1a 80-952 Gdańsk, Polska
https://orcid.org/0000-0002-2700-1578 Orcid
Wszystkie publikacje autora →

Uniwersytet Gdański
ul. Bażyńskiego 1a 80-952 Gdańsk, Polska

Publikacja: 21.12.2022

Status artykułu: Otwarte __T_UNLOCK

Licencja: CC BY  ikona licencji

Udział procentowy autorów:

Karol Gregorczuk (Autor) - 100%

Korekty artykułu:

-

Języki publikacji:

Polski

Liczba wyświetleń: 437

Liczba pobrań: 380