{"id":8933,"date":"2020-09-24T19:28:09","date_gmt":"2020-09-24T17:28:09","guid":{"rendered":"https:\/\/h3africa.org\/?page_id=8933"},"modified":"2022-06-07T21:08:56","modified_gmt":"2022-06-07T19:08:56","slug":"ifgenera","status":"publish","type":"page","link":"https:\/\/h3africa.org\/index.php\/ifgenera\/","title":{"rendered":"Individual Findings in Genetic Research in Africa (IFGeneRA)"},"content":{"rendered":"[vc_row css_animation=”fadeInDown”][vc_column][vc_column_text css_animation=”none” css=”.vc_custom_1600968649155{margin-top: 36px !important;}”]\n
H3Africa ELSI Collaborative Center<\/em><\/a><\/h6>\n

Individual Findings in Genetic Research in Africa (IFGeneRA)<\/h1>\n

The Goal: To investigate the return of individual genetic research results in African genomics research by combining approaches from ethics, bioinformatics, medical genetics, and genetic counseling.<\/h4>\n
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Project Leads<\/h3>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/2″]
\"ifgenera1\"<\/div><\/div>

Dr. Ambroise Wonkam<\/h4>

University of Cape Town<\/p>

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\"ifgenera2\"<\/div><\/div>

Dr. Jantina De Vries<\/h4>

University of Cape Town<\/p>

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The Problem<\/h3>\n

One of the key ethical challenges in genomics research is the little guidance available for whether and how individual genetic research results should be returned to research participants in the African continent. There is virtually no empirical data available describing the preferences and perspectives of the relevant African stakeholders including research participants, ethics committee members, and researchers, on these issues. Furthermore, there are contextual factors in African communities that impact decision-making regarding the return of individual genetic results.<\/p>\n

Project Strategy<\/h3>\n
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  1. Combine methodologies from medical genetics, bioethics, social science, bioinformatics, and health economics to collect empirical evidence from a wide range of stakeholders in both rural and urban settings in three Africa countries.<\/li>\n
  2. Retrospectively investigate the effect of a genetic diagnosis of a monogenic condition on families and community members.<\/li>\n
  3. Conduct a prospective study to explore the expectations and preferences of a wide range of stakeholders for feedback of individual genetic research findings.<\/li>\n
  4. Act as an ethics resource for the H3Africa Consortium by developing an implementation guide for the Framework of Best Practices.<\/li>\n<\/ol>\n

    Outcomes to Date<\/h3>\n

    The IFGeneRA Collaborative Centre generates and synthesizes evidence and insights from its various projects and work to develop a progressive evidence base that will inform the development of context and country specific policies for the return of individual genetic research results in genomics research in Africa. The investigators plan to liaise with regulators in various African countries to facilitate the adaptation of such policies in national regulation. Additionally, they plan to work with continental science organizations such as the African Academy of Sciences and the Alliance for the Acceleration of Excellence in Science in Africa for broader dissemination of their policies.<\/p>\n

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    Project Sites<\/h3>\n

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    A: South Africa<\/strong>
    University of Cape Town<\/p>\n

    B: Botswana<\/strong>
    Botswana Baylor Children\u2019s Clinical Centre of Excellence<\/p>\n

    C: Cameroon<\/strong>
    University of Yaound\u00e9<\/p>\n<\/div>\n<\/div>\n

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    Funding<\/h3>\n
    This work is supported by the U.S. National Institutes of Health (NIH), Office of the Director (OD) and the National Human Genome Research Institute (NHGRI) grant number U54HG009790.<\/div>\n<\/div>[\/vc_column_text][vc_column_text]

    Additional Resources<\/h3>\n

    GeneMAP Promo Video (YouTube)<\/a><\/p>\n

    GeneMAP Twitter Highlight (Twitter)<\/a><\/p>[\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/3″][vc_btn title=”Project Publications (PubMed)” style=”custom” custom_background=”#c12000″ custom_text=”#ffffff” shape=”round” align=”center” link=”url:https%3A%2F%2Fpubmed.ncbi.nlm.nih.gov%2F%3Fterm%3DHG009790%255BGrant%2BNumber%255D|title:IFGeneRA%20PubMed%20Search|target:%20_blank|”][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_btn title=”Scientific Description and Aims (NIH RePORT)” style=”custom” custom_background=”#c12000″ custom_text=”#ffffff” shape=”round” align=”center” link=”url:https%3A%2F%2Fprojectreporter.nih.gov%2Fproject_info_description.cfm%3Faid%3D9949747%26icde%3D51855269%26ddparam%3D%26ddvalue%3D%26ddsub%3D%26cr%3D6%26csb%3Ddefault%26cs%3DASC%26pball%3D|title:IFGeneRA%20NIH%20RePORT|target:%20_blank|”][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_btn title=”Download a PDF of this page” style=”custom” custom_background=”#c12000″ custom_text=”#ffffff” shape=”round” align=”center” link=”url:https%3A%2F%2Fh3africa.org%2Fwp-content%2Fuploads%2F2022%2F06%2FIFGeneRA_H3ACommDoc.pdf|title:IfGeneRA%20Comm%20Doc|target:%20_blank|”][\/vc_column_inner][\/vc_row_inner][vc_column_text]\n

    Return to H3A Projects Page<\/a><\/em><\/p>\n[\/vc_column_text][\/vc_column][\/vc_row]","protected":false},"excerpt":{"rendered":"

    IFGeneRA OVERALL Component The Individual Findings in Genetics Research in Africa (IFGeneRA) H3Africa ELSI Collaborative Centre aims to progressively build an evidence base that forms the basis for context- and country specific development of policies relating to the return of individual genetic research results for African genomic research, <\/p>\n","protected":false},"author":16,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_coblocks_attr":"","_coblocks_dimensions":"","_coblocks_responsive_height":"","_coblocks_accordion_ie_support":"","footnotes":""},"categories":[7,4],"tags":[79],"class_list":["post-8933","page","type-page","status-publish","hentry","category-consortium-documents","category-projects","tag-ethical-legal-and-society-issues-collaborative-centre"],"_links":{"self":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/pages\/8933","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/users\/16"}],"replies":[{"embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/comments?post=8933"}],"version-history":[{"count":6,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/pages\/8933\/revisions"}],"predecessor-version":[{"id":12493,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/pages\/8933\/revisions\/12493"}],"wp:attachment":[{"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/media?parent=8933"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/categories?post=8933"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/h3africa.org\/index.php\/wp-json\/wp\/v2\/tags?post=8933"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}