{"id":8860,"date":"2020-09-21T22:43:58","date_gmt":"2020-09-21T20:43:58","guid":{"rendered":"https:\/\/h3africa.org\/?page_id=8860"},"modified":"2022-06-07T20:14:03","modified_gmt":"2022-06-07T18:14:03","slug":"cebiogen","status":"publish","type":"page","link":"https:\/\/h3africa.org\/index.php\/cebiogen\/","title":{"rendered":"Developing Best Practices of Community Engagement for Genomics and Biobanking in Africa (CEBioGen)"},"content":{"rendered":"[vc_row css_animation=”fadeInDown”][vc_column][vc_column_text css_animation=”none” css=”.vc_custom_1590657817569{margin-top: 36px !important;}”]\n
H3Africa ELSI Collaborative Research Center<\/em><\/a><\/h6>\n

Developing Best Practices of Community Engagement for Genomics and Biobanking in Africa (CEBioGen)<\/h1>\n

The Goal: To investigate the role of community engagement in genomic research and biobanking in sub-Saharan Africa.<\/h4>\n
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Project Leads<\/h3>\n[\/vc_column_text][vc_row_inner][vc_column_inner width=”1\/2″]
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Dr. Anita Ghansah<\/h4>

Noguchi Memorial Institute for Medical Research<\/p>

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Dr. Paulina Tindana<\/h4>

University of Ghana School of Public Health<\/p>

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The Problem<\/h3>\n

Genomic research raises important ethical questions such as the appropriate consent models for the use of archived samples, data sharing, privacy and confidentiality, how communities should be engaged in the research process and how to communicate genetic results to research participants. Although these questions have received considerable attention through academic discourse and empirical research, very little attention is given to the question of what should count as the best ethical practice in communicating genomic research results particularly in Africa.<\/p>\n

Project Strategy<\/h3>\n
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  1. To investigate the role of community engagement (CE) in genomic research and biobanking in sub-Saharan Africa by conducting collaborative research projects across four African countries: Ghana, Nigeria, South Africa, and Kenya.<\/li>\n
  2. Elicit key stakeholders\u2019 views on the value and purpose of CE in genomics.<\/li>\n
  3. Examine the key ways in which local communities should be involved in genomics and biobanking in Africa.<\/li>\n
  4. Identify core competencies that are required for best CE practices.<\/li>\n
  5. Serve as a training and resource center for ethics and CE to support the implementation of genomic research across sub-Saharan Africa.<\/li>\n
  6. Provide short and long-term training opportunities.<\/li>\n<\/ol>\n

    Outcomes & Impact<\/h3>\n