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

 描述（由申请人提供）：生物和数据资源，包括生物库和数据库，在人类基因组学研究和解决非洲健康和疾病问题的应用中发挥着重要作用。目前和新兴生物样本库和数据资源的运营监管尚不明确。特别是，为了成功地治理生物资源，需要解决伦理、法律和社会问题（ELSI）。据传，津巴布韦有 ELSI 的实践，但没有关于 ELSI 在人类基因组学相关的人类生物和数据资源使用和共享方面的现状和需求的经验数据。对人类基因组学生物资源使用和数据共享的公众知识、看法和信念了解有限。目前，津巴布韦在人类遗传/基因组研究和应用方面的 ELSI 教育研究和技术平台有限。因此，首先，GILES 计划将预测并解决与人类基因组学活动的生物和数据资源相关的当前、新出现和持续存在的伦理、法律和社会问题 (ELSI)，这些活动涉及津巴布韦的生物样本收集、存储、数据共享和使用。我们将使用定性方法来实现以下具体目标：(i) 审查和评估 ELSI 与津巴布韦人类基因组学生物和数据资源相关的活动和教育需求 (ii) 建立人类生物样本收集和在基因组学研究和应用中使用的知识、态度和观念，以及 (iii) 加强津巴布韦 ELSI 人类基因组学生物和数据资源的能力。将进行案头审查和研讨会，以确定 ELSI 的需求，以解决津巴布韦人类基因组生物资源当前和新出现的问题。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包括大学、卫生专业人员以及卫生和教育政策制定者在内的利益相关者参与论坛。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，并提高公众的认识。

 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.