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首页> 外文期刊>Systematic Reviews >Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: protocol for a systematic review
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Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: protocol for a systematic review

机译：与中低收入国家的临床基因检测和咨询有关的伦理，社会和文化问题：系统评价的方案

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Background There has been little focus in the literature on how to build genetic testing and counseling services in low- and middle-income countries in a responsible, ethical, and culturally appropriate manner. It is unclear to what extent this area is being explored and what form further research should take. The proposed knowledge synthesis aims to fill this gap in knowledge and mine the existing data to determine the breadth of work in this area and identify ethical, social, and cultural issues that have emerged. Methods/design An integrated knowledge translation approach will be undertaken by engaging knowledge users throughout the review to ensure relevance to their practice. Electronic databases encompassing various disciplines, such as healthcare, social sciences, and public health, will be searched. Studies that address clinical genetic testing and/or counseling and ethical, social, and/or cultural issues of these genetic services, and are performed in low- and middle-income countries as defined by World Bank will be considered for inclusion. Two independent reviewers will be involved in a two-stage literature screening process, data extraction, and quality appraisal. Studies included in the review will be analyzed by thematic analysis. A narrative synthesis guided by the social ecological model will be used to summarize findings. Discussion This systematic review will provide a foundation of evidence regarding ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries. Using the social ecological model as a conceptual framework will facilitate the understanding of broader influences of the sociocultural context on an individual’s experience with clinical genetic testing and counseling, thereby informing interdisciplinary sectors in future recommendations for practice and policy. Systematic review registration PROSPERO CRD42016042894
机译：背景技术文献中很少关注如何以负责任的，符合道德的和文化上适当的方式在中低收入国家建立基因检测和咨询服务。目前尚不清楚该领域的探索程度以及应采取何种形式的进一步研究。拟议的知识综合旨在填补这一知识空白并挖掘现有数据，以确定该领域的工作广度，并确定出现的道德，社会和文化问题。方法/设计将通过在整个评审过程中吸引知识用户来采取综合知识翻译方法，以确保与他们的实践相关。将搜索涵盖医疗，社会科学和公共卫生等各个学科的电子数据库。将考虑纳入涉及世界银行所定义的中低收入国家的，涉及临床遗传测试和/或咨询以及这些遗传服务的伦理，社会和/或文化问题的研究。两名独立审稿人将参与一个两阶段的文献筛选过程，数据提取和质量评估。评价中包括的研究将通过主题分析进行分析。由社会生态模型指导的叙事综合将用于总结发现。讨论本系统的综述将为与低收入和中等收入国家的临床基因检测和咨询相关的伦理，社会和文化问题提供证据基础。使用社会生态模型作为概念框架，将有助于理解社会文化背景对个人临床基因检测和咨询经验的更广泛影响，从而为跨学科领域的实践和政策建议提供参考。系统审查注册PROSPERO CRD42016042894

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