| dc.description.abstract | The flourishing development of genomic medicine over the past two decades has been driven by human biobanks, leading to the establishment of international ethical standards and the enhancement of regulations related to human research and information protection in various countries. During the COVID-19 pandemic, these biobanks became a key factor in breakthroughs and accelerated research and development. Similar to Taiwan′s biobank, which has the grand ambition of exploring causal relationships through continuous tracking over twenty years from its inception, the biobank can serve as a crucial foundation for promptly addressing problems in response to scientific advancements and technological developments while maintaining its original long-term vision. The comprehensiveness of the ethical governance framework becomes the key to the success or failure of the biobank in adapting to environmental trends. Although calls and attempts for public participation in medical research have already taken shape globally, genetic research holds special significance, and the concerns it raises impact not only the individuals involved but also society as a whole. How to address these concerns through effective public communication and the establishment of a new governance framework, in order to safeguard the health and well-being of participants and produce research outcomes that align with justice, has become a critical issue.
The research content of this thesis includes: (1) Reflecting on the challenges faced by bioethics through the study of ethical and social issues primarily based on Taiwan′s biobank, and proposing the direction for the development of bioethics in the post-genomic era; (2) Systematically organizing the relevant theories, research papers, and implementation plans covering public participation in biobanks from various countries, and reviewing their limitations and misconceptions; (3)Reviewing the top-down governance model of professionalism, proposing the concept of professional empowerment, and analyzing and reviewing the comprehensive public participation strategy and community consent plan formulated by the ELSI Project of Taiwan Biobank early planning; (4)Exploring the practices of other existing identity communities, neighborhoods, or consensus groups in promoting successful public participation in biobanks.
This thesis finds that human biobanks and biomedical research must rely on the empowerment of professionals to assist participants in enhancing their autonomy. By establishing community participation mechanisms at different levels and scopes, participants can be substantively involved in the supervision and management of the biobank, enabling them to have ideas and opinions on research topics. Only then can they become co-subjects of the research, jointly producing knowledge with researchers, and have the opportunity to establish a benefit-sharing mechanism that aligns with justice. As human biobanks become more closely integrated with biomedical research and treatment plans, moving towards personalized medicine and healthcare, the return of individual research results has become an important ethical governance issue, which increasingly requires public participation and decision-making. During the development process, how to envision general principles for the large-scale collection, preservation, governance, utilization, and feedback of information, while enriching its ethical governance framework and establishing a comprehensive ethical governance mechanism for biomedical research across society and even at the national level, has become a new global trend. Most importantly, public trust, which benefits both participants and researchers, is crucial. On this foundation, it is possible to support research designs that genuinely benefit public health and well-being, thereby driving the growth of biomedical research. | en_US |