Abstract 摘要

The establishment of human biobanks has begun to play an important function in promoting healthcare in many countries. Biobanks can disclose genetic data and can be used to identify health- and disease-relevant environmental, individual, and clinical factors. Indeed, studies of genetic epidemiology and human genomics increasingly rely on the use of human biobanks, which have played a positive role in breakthroughs in chronic disease research. They have also strongly supported creative research on drugs and the improvement of therapeutic methods.

Currently, biobanks are an important target for development within the area of biomedicine. However, at least in the context of genome research, enormous ethical problems and challenges have arisen. Among those problems and challenges is the important issue of information disclosure: should individual donors be informed only of the average research results from all relevant donors, or should they be informed of their own specific genetic information arising from biobank research? The dominant bioethical view seems to imply the latter – that individual donor information should be made available to the individual donor – according to the fashionable bioethical principle of respect for the individual’s autonomy. However, this essay asserts that such disclosure has both positive and negative effects that should be carefully considered and balanced. It argues that individual donors should not have an absolute right to be informed of biobank findings. Rather, public policy regarding the disclosure of biobank findings to individual donors should be formulated based on the comprehensive consideration of relevant factors: the nature and severity of a genetic risk, the validity of the research findings, the clinical utility of the findings, the feasibility of using the findings, and the integrity of the research.