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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.

ABSTRACT: 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.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.

SUBMITTER: Zhong A

PROVIDER: S-EPMC5505010 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature

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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.

Zhong Adrina A Darren Benedict B Dimaras Helen H

Systematic reviews 20170711 1

<h4>Background</h4>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 cultu ...[more]

PMID: 28697779

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Project description:IntroductionGlobally, transgender and other gender diverse (trans) people face pervasive stigma, which contributes to health inequities across multiple health outcomes. Stigma is a fundamental cause of health inequities because it simultaneously limits access to resources, contributes to systemic vulnerability and generates chronic stress. Anti-trans stigma occurs across multiple socioecological levels, resulting in multiple possible definitions and measurements of trans stigma. Understanding how trans stigma has been measured in low-income and middle-income countries (LMICs) is critical to health promotion efforts for trans communities. Accordingly, this scoping review will identify and examine how anti-trans stigma has been measured in existing LMIC-specific research to inform best practices for measurement of anti-trans stigma that includes consideration of local context.Methods and analysisThis is the protocol for a scoping review of anti-trans stigma in LMICs. We will search (from January 2001 to December 2021) PubMed, WHO Global Medicus and EBSCO. Study selection will conform to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews Checklist. Original studies in English, Spanish, Arabic or Russian will be included. Reviewers will independently screen all citations, full-text articles and abstract data. Data analysis will involve quantitative and qualitative methods. A narrative summary of findings will be conducted.Ethics and disseminationAs a scoping review (no direct interaction with participants), this study is exempt from human subjects oversight. Understanding context-specific ways to measure anti-trans stigma is urgently needed to support trans health globally. The planned scoping review will help to address this gap. Results of the review will be disseminated in a peer-reviewed journal and likely in other media such as conferences, seminars and symposia. PROTOCOL REGISTRATION NUMBER: osf.io/qcs2v.

Project description:IntroductionHealth systems responsiveness is a key objective of any health system, yet it is the least studied of all objectives particularly in low-income and middle-income countries. Research on health systems responsiveness highlights its multiple elements, for example, dignity and confidentiality. Little is known, however, about underlying theories of health systems responsiveness, and the mechanisms through which responsiveness works. This realist synthesis contributes to bridging these two knowledge gaps.Methods and analysisIn this realist synthesis, we will use a four-step process, comprising: mapping of theoretical bases, formulation of programme theories, theory refinement and testing of programme theories using literature and empirical data from Ghana and Vietnam. We will include theoretical and conceptual pieces, reviews, empirical studies and grey literature, alongside the primary data. We will explore responsiveness as entailing external and internal interactions within health systems. The search strategy will be purposive and iterative, with continuous screening and refinement of theories. Data extraction will be combined with quality appraisal, using appropriate tools. Each fragment of evidence will be appraised as it is being extracted, for its relevance to the emerging programme theories and methodological rigour. The extracted data pertaining to contexts, mechanisms and outcomes will be synthesised to identify patterns and contradictions. Results will be reported using narrative explanations, following established guidance on realist syntheses.Ethics and disseminationEthics approvals for the wider RESPONSE (Improving health systems responsiveness to neglected health needs of vulnerable groups in Ghana and Vietnam) study, of which this review is one part, were obtained from the ethics committees of the following institutions: London School of Hygiene and Tropical Medicine (ref: 22981), University of Leeds, School of Medicine (ref: MREC19-051), Ghana Health Service (ref: GHS-ERC 012/03/20) and Hanoi University of Public Health (ref: 020-149/DD-YTCC).We will disseminate results through academic papers, conference presentations and stakeholder workshops in Ghana and Vietnam.Prospero registration numberCRD42020200353. Full record: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020200353.

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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.

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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.

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