Module 2: Lesson 6 – Community Engagement

Trainer

Name: Dr Paulina Tindana
Affiliation: Navrongo Health Research Centre
Location: Ghana

Dr. Paulina Tindana is a Senior Research fellow/Deputy Chief Health Research Officer at the Navrongo Health Research Centre in northern Ghana. She received a BA degree at the University of Ghana in 1999, Johns Hopkins Fogarty African Bioethics Training Programme in 2002, a Masters of Health Sciences from the University of Toronto in 2004 and a DPhil (Public Health) at the Ethox Centre, University of Oxford in 2013. Her main research focus is on carrying out empirical ethics projects on the ethical, social and cultural implications of international collaborative research, particularly the practical ethical issues arising in genetic/genomic research, informed consent, ethics review, community engagement strategies in global health research and health systems research ethics. She has published widely on these topics in peer reviewed journals. She has also contributed to several research ethics training programmes in Ghana and other parts of Africa. Dr. Tindana is the Chair of the H3Africa Community Engagement Working Group and has also served on a number of international ethics committees and advisory boards including the UNESCO International Bioethics Committee, the International Association of Bioethics and the Plasmodium Diversity Network Africa (PDNA), with responsibility for developing its governance and ethics framework.

Summary
The aim of this module is to introduce participants to the broad concept of community engagement in the context of genomic research. The module will discuss the key principles and value of community engagement, the various models/methods and approaches to community engagement drawing on experiences from previous genomic studies in Africa such as MalariaGen, HapMap and H3Africa. Participants will also be taken through the key challenges of community engagement and strategies for addressing them. At the end of the module, there will also be a brief discussion on strategies for evaluating the effectiveness of community engagement.

Learning Outcomes
By the end of this module, the participants will be able to:
● To explain the broad concept of community and community engagement
● To distinguish between community engagement and public engagement
● To explain and justify the relevance and value of community engagement to genomic research drawing on ethical principles
● To identify existing models/methods/approaches to community engagement
● To design a community engagement plan for their research projects
● To critically evaluate the key challenges of community engagement and strategies for addressing them

Class Videos
Module2_Lesson6_Video1_Tindana
Module2_Lesson6_Video2_Tindana

Class Slides
Module2_Lesson6_Slides1_Tindana

Assessments: Pre-Class Exercises
Please read the story below and highlight how the researchers could have avoided the tribe withdrawing their samples from further research?
http://www.nytimes.com/2010/04/22/us/22dna.html?pagewanted=all&_r=0

Assessments: Class Exercises
A genomic research project seeks to recruit healthy adults between the ages of 40 to 60 years in a rural settlement in Northern Ghana. The project will involve collecting 10 mls of blood and urine sample to run series of tests on the prevalence of diabetes in the community and to identify genetic variants in the community. Design a community engagement strategy for a research project outlining how the target community should be identified, what community engagement activities will be conducted and how various constituents of the community will be engaged in the project

Class Evaluation
See course evaluations section.

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