Perspectives on Genomics Research and Curative Therapies for Sickle Cell Disease in Uganda

Perspectives on Genomics Research and Curative Therapies for Sickle Cell Disease in Uganda

Sickle cell clinic in Kalangala, Uganda where Joel Kibonwabake, one of the researchers, works.

The remote nature of our project meant that communication was one of the biggest aspects of the project. Effective communication was both challenging and, when we got it right, rewarding. The original plan for the project was for Autumn to conduct interviews in Kampala and Kalangala, Uganda. However, due to the pandemic, we had to change course and conduct research remotely. We employed two researchers and needed to focus on strong team building and collaboration. This new format presented several unique challenges. We had to rely heavily on the work ethic and availability of our research assistants. They were amazing in being able to collect rich interviews and assist with the Ugandan IRB process. However, because there was political strife occurring, unstable internet, transportation restrictions due to COVID-19, and the researchers having personal life matters to attend to, it would often take longer than expected to move the project along. These challenges taught us to be mindful, to recognize that these researchers were, first and foremost individuals with their own obligations and priorities. Learning to understand, empathize with and manage these conflicting life events and their potential impact on the project through effective communication was perhaps one of the most invaluable lessons we took from this project.

Image: Sickle cell clinic in Kalangala, Uganda where Joel Kibonwabake, one of the researchers, works.