학술논문
Data sharing practices in collaborative human genomic research in low- and middle-income countries: A systematic review protocol.
Document Type
Academic Journal
Author
Ekusai-Sebatta D; Department of Anatomy, School of Biomedical Sciences, Makerere University College of Health Sciences, Kampala, Uganda.; Ocan M; Department of Pharmacology, School of Biomedical Sciences, Makerere University College of Health Sciences, Kampala, Uganda.; Africa Centre for Systematic Reviews & Knowledge Translation, Kampala, Uganda.; Singh S; Discipline of Dentistry, University of KwaZulu Natal, Johannesburg, South Africa.; Kyaddondo D; Child Health and Development Centre, School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda.; Akena D; Africa Centre for Systematic Reviews & Knowledge Translation, Kampala, Uganda.; Department of Psychiatry, School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda.; Nakalembe L; Soroti University, Kampala, Uganda.; Apunyo R; Clinical Epidemiology Unit, Department of Medicine, School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda.; Kinengyere AA; Department of Anatomy, School of Biomedical Sciences, Makerere University College of Health Sciences, Kampala, Uganda.; Africa Centre for Systematic Reviews & Knowledge Translation, Kampala, Uganda.; Namisango E; Africa Centre for Systematic Reviews & Knowledge Translation, Kampala, Uganda.; Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, Kings College London University of London, London, United Kingdom.; Obuku EA; Africa Centre for Systematic Reviews & Knowledge Translation, Kampala, Uganda.; Clinical Epidemiology Unit, Department of Medicine, School of Medicine, Makerere University College of Health Sciences, Kampala, Uganda.; London School of Hygiene and Tropical Medicine, Faculty of Epidemiology and Population Health, London, United Kingdom.; Mwaka E; Department of Anatomy, School of Biomedical Sciences, Makerere University College of Health Sciences, Kampala, Uganda.
Source
Publisher: Public Library of Science Country of Publication: United States NLM ID: 101285081 Publication Model: eCollection Cited Medium: Internet ISSN: 1932-6203 (Electronic) Linking ISSN: 19326203 NLM ISO Abbreviation: PLoS One Subsets: MEDLINE
Subject
Language
English
Abstract
Introduction: The practice of creating large databases has become increasingly common by combining research participants' data into larger repositories. Funders now require that data sharing be considered in newly funded research project, unless there are justifiable reasons not to do so. Access to genomic data brings along a host of ethical concerns as well as fairness and equity in the conduct of collaborative research between researchers from high- income and low-and middle-income countries.
Materials and Methods: This systematic review protocol will be developed in line with PRISMA -guidelines which refers to Open Science Framework, registered in PROSPERO (https://www.crd.york.ac.uk/prospero/) record CRD42022297984 and published in a peer reviewed journal. Data sources will include PubMed, google scholar, EMBASE, Web of science and MEDLINE. Both published and grey literature will be searched. Subject matter experts including bioethicists, principal investigators of genomic research projects and research administrators will be contacted. After de-duplication, titles and abstracts will be screened for eligibility. Data extraction will be undertaken using a piloted form designed in EPPI-Reviewer software before conducting risk of bias assessments by a pair of reviewers, acting independently. Any discrepancies will be resolved by consensus. Analysis will be done using a structured narrative synthesis and where feasible metanalysis. This review will attempt to highlight the context of data sharing practices in the global North-South and South-South collaborative human genomic research in low- and middle-income countries. This review will enhance the body of evidence on ethical, legal and social implications of data sharing in international collaborative genomic research setting criteria for data sharing. The full report will be shared with relevant stakeholders including universities, civil society, funders, and departments of genomic research to ensure an adequate reach in low-and middle-income countries (LMICs).
Competing Interests: The authors have declared that no competing interest exists.
(Copyright: © 2023 Ekusai-Sebatta et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
Materials and Methods: This systematic review protocol will be developed in line with PRISMA -guidelines which refers to Open Science Framework, registered in PROSPERO (https://www.crd.york.ac.uk/prospero/) record CRD42022297984 and published in a peer reviewed journal. Data sources will include PubMed, google scholar, EMBASE, Web of science and MEDLINE. Both published and grey literature will be searched. Subject matter experts including bioethicists, principal investigators of genomic research projects and research administrators will be contacted. After de-duplication, titles and abstracts will be screened for eligibility. Data extraction will be undertaken using a piloted form designed in EPPI-Reviewer software before conducting risk of bias assessments by a pair of reviewers, acting independently. Any discrepancies will be resolved by consensus. Analysis will be done using a structured narrative synthesis and where feasible metanalysis. This review will attempt to highlight the context of data sharing practices in the global North-South and South-South collaborative human genomic research in low- and middle-income countries. This review will enhance the body of evidence on ethical, legal and social implications of data sharing in international collaborative genomic research setting criteria for data sharing. The full report will be shared with relevant stakeholders including universities, civil society, funders, and departments of genomic research to ensure an adequate reach in low-and middle-income countries (LMICs).
Competing Interests: The authors have declared that no competing interest exists.
(Copyright: © 2023 Ekusai-Sebatta et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)