GENOMICS, INHERITANCE, ETHICS, LAW AND SOCIETY (GILES) - Initiative for genomics, ethical, legal and societal issues in bioresources for human genomics in Zimbabwe.

 描述(申请人提供)：生物和数据资源，包括生物库和数据库，在人类基因组研究和应用中发挥重要作用，以解决非洲的健康和疾病问题。没有明确的道德和法律结构来监督现有的和新兴的生物库和数据资源的运作。特别是，需要解决伦理、法律和社会问题(ELSI)，才能成功地管理生物资源。在津巴布韦，传闻中有ELSI的实践，但没有关于ELSI在人类生物和与人类基因组相关的数据资源的使用和共享中的地位和需求的经验数据。关于人类基因组生物资源利用和数据共享的公众知识、看法和信念的了解有限。目前，津巴布韦在人类基因/基因组研究和应用方面的ELSI教育的研究和技术平台有限。因此，作为开始，Giles计划将预测和解决当前、新出现的和持续存在的伦理、法律和社会问题(ELSI)，这些问题与用于人类基因组学活动的生物和数据资源有关，涉及津巴布韦的生物样品收集、存储、数据共享和使用。我们将使用定性的方法来解决以下具体目标：(I)审查和评估津巴布韦与人类基因组学生物和数据资源有关的ELSI活动和教育需求；(Ii)建立关于收集和使用人类基因组学生物样本的知识、态度和看法；以及(Iii)加强津巴布韦人类基因组学生物和数据资源的ELSI能力。将进行案头审查和讲习班，以确定该系统在解决津巴布韦人类基因组生物资源方面当前和新出现的问题方面的需要。焦点小组讨论将探讨当前和未来研究参与者的观点。这将指导教育的发展，以及一个利益攸关方参与论坛，包括大学、卫生专业人员以及卫生和教育政策制定者。最后，Giles计划将启动教育工具的开发，以培训学生、教师、研究科学家和机构伦理审查委员会成员，并建立对公众的认识。

 DESCRIPTION (provided by applicant): Bio- and data resources including biobanks and databases, play an important role in human genomics research and applications towards addressing problems of health and disease in Africa. There are unclear ethical and legal structures to oversee the operation of the current and emerging biobanks and data resources. In particular, ethical, legal and societal issues (ELSI) need to be addressed for the successful the governance of bioresources. In Zimbabwe, anecdotally, there are practice of ELSI, but there are no empirical data about the status and needs for ELSI in human bio- and data resource use and sharing related to human genomics. There is limited understanding of public knowledge, perceptions and beliefs regarding human genomics bioresource use and data sharing. Currently there is limited research and technological platforms for ELSI education in human genetic/genomic research and applications in Zimbabwe. Therefore, as a start, the GILES program will anticipate and address current, emerging and persisting ethical, legal and societal issues (ELSI) related to bio- and data resources for human genomics activities which involve biospecimen collection, storage, data sharing and use in Zimbabwe. We will use qualitative methods to address the following specific aims: (i) review and evaluate activities and educational needs for ELSI related to bio- and data resources for human genomics in Zimbabwe (ii) establish knowledge, attitudes and perceptions of human biospecimen collection and use in genomics research and applications and (iii) strengthen capacity for ELSI of bio- and data resources for human genomics in Zimbabwe. Desk reviews and workshops will be conducted to determine the needs for ELSIs to address current and emerging issues in human genomics bioresources in Zimbabwe. Focus group discussions will explore perspectives of current and prospective research participants. This will guide the development of education as well as a stakeholder engagement forum inclusive of universities, health professionals as well as health and education policy makers. Finally, the GILES program will initiate the development of educational tools to train students, faculty, research scientists and institutional ethics review committee members, as well as build awareness to the public.