Problems of biobank sharing in medical colleges and universities in China
[Objective]Globally,biobanks have become an essential tool for the protection and development of human genetic resources,and their development has played a very pivotal role in promoting basic research in life sciences and clinical diagnosis and treatment of major diseases.High-quality and standardized biobanks have become essential for basic research,translational clinical medicine research,and the implementation of precision medicine strategies.Recently,China has established some national or regional alliance-level biobanks;however,the issue of sharing mechanisms has always been a long-term factor restricting the full utilization of biological resources.There are a few examples of colleges and universities coordinating resources to promote the construction of school-level biobanks.[Methods]Herein,the focus is on constructing biobanks in medical colleges and universities in China,analyzing the difficulties and bottlenecks in sharing,and corresponding optimization policy references are proposed.The research methods employed are literature review,typical case analysis,survey questionnaire,and in-depth interviews,among others,to conduct multichannel and all-around research on the problem.[Results]Based on the literature survey,this paper summarizes the problems hindering biobank sharing into internal construction systems,external institutional management,and ethical issues,such as imperfect sample quality standardization and information access,informed consent,benefit sharing,and other specific issues.Through questionnaires,semi-structured interviews,and in-depth interviews,the results reveal that insufficient willingness to share,incomplete information disclosure,unclear benefit-sharing mechanism,lack of standardization of sample and information quality,and ethical concerns are the prominent problems hindering sharing.The relatively successful mechanism of the international and domestic representative biobanks in promoting sharing includes the formulation and implementation of unified biobank construction standards and norms,establishment of public and open information platforms,standardization of sharing rules and processes,benefit-sharing and distribution mechanism,and full implementation of scientific and reasonable ethical principles.[Conclusion]By referring to international and domestic successful cases while considering the advantages and foundations of medical colleges and universities,this paper proposes the following suggestions for biobank construction in medical colleges and universities.First,it is crucial to strengthen the top-level design and to create a"centralized and disaggregated"biological sample storage platform and network-sharing platform.Second,it is necessary to continuously strengthen the scientific construction of biological sample banks,promote the standardization of biological sample bank technology,boost the strength of professional management teams,and pay great attention to the disciplinary construction of biobanks.Third,strengthening the construction of the ethical governance system and ensuring reasonable informed consent and data security are important measures to promote effective data sharing while ensuring data privacy.Last,drawing on agreements signed by both parties for sample and data sharing,it is essential to establish the life cycle of research result data,constantly improve the sharing management mechanism,and innovate the benefit-sharing model.
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