ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

Go Yoshizawa,Chingli Hu,Wei Zhu,Yoni Syukriani,Daniel Fu Chang Tsai,Calvin Wai-Loon Ho,Kazuto Kato,Jusaku Minari,Hannah Kim,Ilhak Lee

doi:10.1186/gm556

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.

Highlights

Research on the ethical, legal and social implications (ELSI) of human genetics and genomics was originally developed in the context of the Human Genome Project (HGP) [1,2], and it is applied in other areas of research, such as nanotechnology research and development [3]
We aim to review current ELSI practices and regulations relating to human genomic research in a selection of East and Southeast Asian countries, namely countries have introduced annual evaluations (China), Indonesia, Japan, South Korea, Singapore and Taiwan
A level of demographic distribution is achieved with these East Asian countries, and each of these is actively engaged in genomic research and has launched or is about to launch a population biobank [18]

Summary

Introduction

Legal and social implications (ELSI) of human genetics and genomics was originally developed in the context of the Human Genome Project (HGP) [1,2], and it is applied in other areas of research, such as nanotechnology research and development [3]. In Indonesia, concerns over biopiracy have led to the enactment of the Health Law and the pronouncement of Ministry of Health regulations that give emphasis to safeguarding national sovereignty, especially in relation to biological resources and benefit sharing at a country level These differences in ELSI practices are again more likely a consequence of socio-political concerns that are countryspecific, rather than local application of universal ethical requirements [64]. When comparing ELSI practices in East Asian and Western countries, a more accurate and up-to-date view may be that ethical, legal and social concerns that arise from genetic or genomic research are often shared, differences arise in emphasis and approach Another issue is the difficulty of ensuring that sample donors have acted voluntarily and on an informed basis. Some have observed that public discourses around science policies exist in Singapore but are limited by a lack of plurality and diversity of the participant communities [74]

Conclusions and future directions

Yesley MS

49. Ho CW-L

51. Bioethics Advisory Committee

54. Baber Z: Global DNA