Table 2 ELSI practices and regulations for human genomic research in East Asia

China

Interim Measures for the Administration of Human Genetic Resources (1998) [30]

Ministry of Science and Technology; Ministry of Health

Public concerns about the misuse of genetic information

Public distrust of authorities

Regulations on Ethics Review of Biomedical Research Involving Human Subjects (2007) [31]

Ministry of Health

Indonesia

National Guideline on Research Ethics: Genetic Research (2008)

National Committee on Research Ethics

Protection of rights and privacy of indigenous populations

National Regulation on Material Transfer Agreement (2009)

Ministry of Health

Need for more integrated approach on genome research

Low public awareness on genetic information and related ELSI issues

Japan

Ethical Guidelines for Human Genome/Gene Analysis Research (2001)

Ministry of Education, Culture, Sports, Science and Technology; Ministry of Health, Labour and Welfare; Ministry of Economy, Industry and Trade

Public concerns about privacy protection in relation to genetic information

Protection of Personal Information Act (2003)

Consumer Affairs Agency

Singapore

Guidelines for IRBs (2004)

Bioethics Advisory Committee/Ministry of Health

Public concerns about potential discrimination, inequitable access and conflicts of interest

Guidelines on Genetic Testing and Research (2005)

Bioethics Advisory Committee/Ministry of Health

National Registries of Disease Act (2007)

National Registry of Diseases Office (NRDO)

Guidelines on Use of Personal Information in Biomedical Research (2007)

Bioethics Advisory Committee/Ministry of Health

Personal Data Protection Act (2012)

Data Protection Commission

South Korea

Bioethics and Biosafety Act (2005)

National Bioethics Committee

Low public awareness of genomic medicine

Personal Information Protection Act (2012)

Ministry of Public Administration and Security

Guidelines for Protecting Genomic Information in Medical Institutions (2012)

Ministry of Public Administration and Security; Ministry of Health and Welfare

Guidelines for Protecting Genomic Information (2013)

National Project for Personalized Genomic Medicine 21 (PGM21) [32]

Taiwan

Guidelines for Collection and Use of Human Specimens for Research (2002)

Ministry of Health and Welfare

Insufficient public communication and trust

Strict legal regulations due to privacy concerns from human right groups

Regulations on Human Trials (2009)

Ministry of Health and Welfare

Personal Information Protection Act (2010)

Ministry of Justice

Human Biobank Management Act (2010) [33]

Ministry of Health and Welfare

Human Subjects Research Act (2011)

Ministry of Health and Welfare