RESUMEN
The ethical practices for human biobanks in China are intended to safeguard the interests of all the participants, to standardize the construction, management, and resource sharing of human biobanks, to promote the development of medical research, and to improve public health and well-being. The practices contain several chapters: General Principles; Ethics Review; Informed Consent; Privacy Protection; Benefits of Sharing; and Conflict of Interest.
Asunto(s)
Bancos de Muestras Biológicas/ética , Investigación Biomédica/ética , Guías de Práctica Clínica como Asunto/normas , China , Humanos , Difusión de la Información/ética , Consentimiento Informado/éticaRESUMEN
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.