Ethical Issues Of Human Biobanks Data Sharing

The human biobank is the basic resource platform to realize the development of precision medicine and transformation medicine,and the data sharing of human biobank has gradually become an effective way to promote life science research and medical research.With the development of high-throughput sequencing technology and the maturation of RNA analysis technology,it is possible to extract massive amounts of data from human biobank,and the data of human biobank also show explosive growth.After entering the era of big data,the data sharing of human biobank has increasingly become a new way to satisfy life science research and medical research to satisfy massive sample data.The goal of data sharing in human biobank is to promote the development of transforming medicine and precision medicine,to enhance human well-being and improve the quality of human life,but it also has many ethical problems.The main ethical issues brought about by data sharing in the human biobank are privacy protection issues,intellectual property issues,security issues and benefit sharing issues.First,data sharing of the human biobank can lead to personal privacy disclosure,social discrimination and affect the normal life and work of the sample data provider.In addition,the research results of data sharing in the human biobank can be patented,and the patent issue should not be controversial;then,the data sharing of the human biobank may pose a serious threat to the national security of the sample data provider country and the economic security of the biological industry;Finally,patent applications for data sharing results in the human biobank will lead to benefit-sharing issues.The existing imbalance of interest sharing and the way of benefit sharing are not perfect,which restricts the effective realization of data sharing in human biobank.Human biobank data sharing is an inevitable choice for promoting the development of life sciences and medicine,and an inevitable trend in the future development.Based on the ethical governance and mutual aid theory of data sharing in the human biobank,five basic principles that should be followed in the ethical governance framework of the human biobank are proposed: the principle of informed consent,the principle of confidentiality,and the principle of fair access,practical principles,principles of transparency.At the same time,five basic suggestions for the sharing of human biobank are put forward: strengthen the construction of bioethics committee,establish and improve the laws and regulations of human biobank data sharing,establish a unified shared data platform,and strengthen international cooperation,enhance the security of shared data.