Division of Health Promotion, University of Toronto, Toronto, Ontario, Canada.
Human Biology Program, Faculty of Arts & Science, University of Toronto, Toronto, ON, Canada.
Syst Rev. 2017 Jul 11;6(1):140. doi: 10.1186/s13643-017-0535-2.
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.
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.
PROSPERO CRD42016042894.
文献中很少关注如何以负责任、合乎道德且文化适宜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进一步研究应采取何种形式。本研究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，并确定已出现的伦理、社会和文化问题。
方法/设计：通过在整个审查过程中让知识使用者参与，采用综合知识转化方法，以确保与他们的实践相关。将搜索涵盖医疗保健、社会科学和公共卫生等各种学科的电子数据库。将考虑纳入在中低收入国家（按世界银行定义）进行的、涉及临床基因检测和/或咨询以及这些基因服务的伦理、社会和/或文化问题的研究。两名独立的审查员将参与两阶段文献筛选过程、数据提取和质量评估。纳入审查的研究将通过主题分析进行分析。将使用社会生态模型指导的叙述性综合方法来总结研究结果。
本系统评价将为中低收入国家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体临床基因检测和咨询体验的更广泛影响，从而为未来的实践和政策建议提供跨学科部门的信息。
PROSPERO CRD42016042894。
