Abstract
BackgroundThere 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/designAn 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.DiscussionThis 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 registrationPROSPERO CRD42016042894
Highlights
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
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
Institutes of Health supports researchers studying the ethical, legal, and societal implications of genomic research in sub-Saharan Africa [41], but there is no equivalent push for similar research regarding the implementation of clinical genetic testing services, despite the fact that existing medical genetic services established in North America and Europe are being exported to lowand middle-income countries (LMICs)
Summary
Strengths and limitations A knowledge synthesis of ethical, social, and cultural issues pertaining to genetic testing and counseling in LMICs is needed to build understanding of the factors that are relevant in implementing genetic services. By limiting the narrative synthesis to English studies only, it excludes the additional useful insights that are present in local languages in LMICs. there could be useful insights in gray literature in LMICs. this review is an important first step to build evidence for knowledge users within multiple sectors and stimulate interdisciplinary discussion with the overall aim of developing evidence-based, ethical, and culturally sensitive clinical genetic services in LMICs. Dissemination The review team plans to engage the broader medical genetics community to disseminate study results and initiate knowledge exchange. The synthesized findings of this systematic review will be shared with and evaluated and implemented by the end-user committee They will disseminate the results to their client base, practice, academic partners, and/or organization audience and facilitate translation to relevant decision-makers.
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