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首页> 外文期刊>Frontiers in Public Health >Equitable Participation in Biobanks: The Risks and Benefits of a a??Dynamic Consenta?? Approach
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Equitable Participation in Biobanks: The Risks and Benefits of a a??Dynamic Consenta?? Approach

机译：公平参与生物库：“动态Consenta”的风险和收益方法

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Participation in biobanks tends to favor certain groups—white, middle-class, more highly-educated—often to the exclusion of others, such as indigenous people, the socially-disadvantaged and the culturally and linguistically diverse. Barriers to participation, which include age, location, cultural sensitivities around human tissue, and issues of literacy and language, can influence the diversity of samples found in biobanks. This has implications for the generalizability of research findings from biobanks being able to be translated into the clinic. Dynamic Consent, which is a digital decision-support tool, could improve participants' recruitment to, and engagement with, biobanks over time and help to overcome some of the barriers to participation. However, there are also risks that it may deepen the “digital divide” by favoring those with knowledge and access to digital technologies, with the potential to decrease participant engagement in research. When applying a Dynamic Consent approach in biobanking, researchers should give particular attention to adaptations that can improve participant inclusivity, and evaluate the tool empirically, with a focus on equity-relevant outcome measures. This may help biobanks to fulfill their promise of enabling translational research that is relevant to all.
机译：参与生物库往往倾向于某些群体-白人，中产阶级，受过高等教育的群体-通常被排斥在外，例如土著人民，社会弱势群体以及文化和语言上的多样性。参与的障碍，包括年龄，位置，人体组织周围的文化敏感性以及识字和语言问题，都可能影响生物库中样本的多样性。这对于能够将生物库的研究结果推广到临床具有普遍性。动态同意书（Dynamic Consent）是一种数字决策支持工具，可以随着时间的推移改善参与者对生物库的招募和参与，并有助于克服参与过程中的一些障碍。但是，也存在这样的风险，即通过青睐那些拥有知识并能使用数字技术的人，加深“数字鸿沟”，并有可能减少参与者对研究的参与。在生物银行中应用动态同意方法时，研究人员应特别注意可提高参与者包容性的适应措施，并通过经验评估工具，重点是与股权相关的成果衡量指标。这可能会帮助生物库兑现其实现与所有人相关的转化研究的承诺。

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