title: ELSI practices in genomic research in East Asia: implications for research collaboration and public participation.
abstract: Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the 'ELSI 2.0' initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries.
authors.affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka 565-0871, Japan.
authors.forename: Go
authors.initials: G
authors.lastname: Yoshizawa
authors.affiliation: Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, 10 Medical Drive, Singapore 117597, Republic of Singapore ; The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK.
authors.forename: Calvin Wai-Loon
authors.initials: CW
authors.lastname: Ho
authors.affiliation: Department of Social Sciences, Fudan University, 220 Handan Road, Shanghai 200433, China.
authors.forename: Wei
authors.initials: W
authors.lastname: Zhu
authors.affiliation: Office of the President, Shanghai Jiaotong University School of Medicine, 227 Chongqing Road, Shanghai 200025, China.
authors.forename: Chingli
authors.initials: C
authors.lastname: Hu
authors.affiliation: Department of Forensic and Legal Medicine, Faculty of Medicine, Padjadjaran University, Jl. Eijkman 38, Bandung 40161, Indonesia.
authors.forename: Yoni
authors.initials: Y
authors.lastname: Syukriani
authors.affiliation: Center for ELSI Research, Asian Institute for Bioethics and Health Law, Department of Medical Law and Ethics, College of Medicine, Yonsei University, 50, Yonsei-ro, Seodaemun-gu, Seoul 120-749, South Korea.
authors.forename: Ilhak
authors.initials: I
authors.lastname: Lee
authors.affiliation: Center for ELSI Research, Asian Institute for Bioethics and Health Law, Department of Medical Law and Ethics, College of Medicine, Yonsei University, 50, Yonsei-ro, Seodaemun-gu, Seoul 120-749, South Korea.
authors.forename: Hannah
authors.initials: H
authors.lastname: Kim
authors.affiliation: Department of Social Medicine, National Taiwan University College of Medicine, 1 Section 1, Jen-Ai Road, Taipei 100, Taiwan.
authors.forename: Daniel Fu Chang
authors.initials: DF
authors.lastname: Tsai
authors.affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka 565-0871, Japan.
authors.forename: Jusaku
authors.initials: J
authors.lastname: Minari
authors.affiliation: Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, 2-2 Yamadaoka, Suita, Osaka 565-0871, Japan ; Institute for Integrated Cell-Material Sciences (iCeMS), Kyoto University, Yoshida Ushinomiya-cho, Sakyo-ku, Kyoto 606-8501, Japan.
authors.forename: Kazuto
authors.initials: K
authors.lastname: Kato