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      Role of genomics literacy in reducing the burden of common genetic diseases in Africa

      review-article
      1 , 2 , , 1
      Molecular Genetics & Genomic Medicine
      John Wiley and Sons Inc.
      Africa, education, genetics, genomics, literacy

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          Abstract

          Background

          In Africa, health practitioners and the current knowledge of the public on genetics and genomics is still very low and yet this has potential to reduce the burden of common genetic diseases. Many initiatives have promoted genomic research, infrastructure, and capacity building in Africa. What remains to be done is to improve genomics literacy among populations and communities while utilizing an array of strategies. Genomic literacy and awareness are key in the management of genetic diseases which includes diagnosis, prevention of complications and therapy. Africa is characterized by great cultural and language diversity thereby requiring a multidisciplinary approach to improving public and community genomics literacy and engagement. However, this is further complicated by having the fact that sub‐Saharan Africa is comprised of countries with the lowest literacy rates in the world.

          Methods

          We applied the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines to review genomic literacy in Africa using PubMed database.

          Results

          We found very limited evidence of genomics literacy for genetic diseases in Africa.

          Conclusion

          We propose a number of approaches that if adopted will significantly increase the genomic literacy and reduce the burden of genetic diseases in Africa.

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          Most cited references40

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          Charting a course for genomic medicine from base pairs to bedside.

          There has been much progress in genomics in the ten years since a draft sequence of the human genome was published. Opportunities for understanding health and disease are now unprecedented, as advances in genomics are harnessed to obtain robust foundational knowledge about the structure and function of the human genome and about the genetic contributions to human health and disease. Here we articulate a 2011 vision for the future of genomics research and describe the path towards an era of genomic medicine.
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            Community engagement in research: frameworks for education and peer review.

            Community engagement in research may enhance a community's ability to address its own health needs and health disparities issues while ensuring that researchers understand community priorities. However, there are researchers with limited understanding of and experience with effective methods of engaging communities. Furthermore, limited guidance is available for peer-review panels on evaluating proposals for research that engages communities. The National Institutes of Health Director's Council of Public Representatives developed a community engagement framework that includes values, strategies to operationalize each value, and potential outcomes of their use, as well as a peer-review framework for evaluating research that engages communities. Use of these frameworks for educating researchers to create and sustain authentic community-academic partnerships will increase accountability and equality between the partners.
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              The family history--more important than ever.

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                Author and article information

                Contributors
                gmboowa@gmail.com
                Journal
                Mol Genet Genomic Med
                Mol Genet Genomic Med
                10.1002/(ISSN)2324-9269
                MGG3
                Molecular Genetics & Genomic Medicine
                John Wiley and Sons Inc. (Hoboken )
                2324-9269
                26 May 2019
                July 2019
                : 7
                : 7 ( doiID: 10.1002/mgg3.2019.7.issue-7 )
                : e00776
                Affiliations
                [ 1 ] Department of Immunology and Molecular Biology College of Health Sciences, Makerere University Kampala Uganda
                [ 2 ] Department of Medical Microbiology College of Health Sciences, Makerere University Kampala Uganda
                Author notes
                [*] [* ] Correspondence

                Gerald Mboowa, Department of Immunology and Molecular Biology, College of Health Sciences, Makerere University, Kampala, Uganda.

                Email: gmboowa@ 123456gmail.com

                Author information
                https://orcid.org/0000-0001-8445-9414
                https://orcid.org/0000-0001-7785-7297
                Article
                MGG3776
                10.1002/mgg3.776
                6625136
                31131548
                3ea67b7b-d870-415e-b1e1-cd8459d29394
                © 2019 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 18 December 2018
                : 12 February 2019
                : 14 May 2019
                Page count
                Figures: 2, Tables: 1, Pages: 8, Words: 5958
                Funding
                Funded by: DELTAS Africa Initiative
                Award ID: DEL-15-011
                Funded by: New Partnership for Africa's Development Planning and Coordinating Agency
                Funded by: Wellcome Trust
                Award ID: 107742/Z/15/Z
                Funded by: UK Government
                Funded by: Collaborative African Genomics Network (CAfGEN) through NIH
                Award ID: 1U54AI110398
                Categories
                Review Article
                Review Article
                Custom metadata
                2.0
                mgg3776
                July 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.6.5 mode:remove_FC converted:12.07.2019

                africa,education,genetics,genomics,literacy
                africa, education, genetics, genomics, literacy

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