Epilepsy Research in Low-Resource Areas: The Complexities of Data and Consent
Although 80% of people with epilepsy live in low- and middle-income countries (LMICs), most epilepsy research originates in high-income regions. Initiating and perpetuating epilepsy research in LMICs requires addressing economic, ethical, human resource, and infrastructure challenges. Without knowing how many people are affected by epilepsy, governments, academia, and other organizations cannot prioritize research and care. In some countries, there are so few studies that existing data are often analyzed and applied in non-representative ways. A 2023 article on ethical and validity issues in low-income countries described the diversity of epilepsy-related factors in Africa. “Africa is a diverse continent; a study done in one part may have totally different data compared with a study done in another part,” said Samson Gwer, senior author of the study. “But because of the paucity of studies, the data that does exist is taken to be representative of the whole of Africa.”