May 21, 2024

Epilepsy Research in Low-Resource Areas: The Complexities of Data and Consent

Article published by Newswise

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.” Pauline Samia, chair of the Department of Pediatrics and Child Health at Aga Khan University, Nairobi, and first author of the 2023 study noted, I believe the same can be said of various other countries in Africa, and parts of Asia. We need to generate a lot more research, so the data are representative.  Compared with people with epilepsy in higher-resource countries, people in LMICs may have less education and awareness about epilepsy and may be affected by stigma, misinformation, and myths that make it less likely they will be open about their epilepsy or understand the importance of participating in research. The authors of the 2023 paper recommend that researchers deliberately consider individual protection, clear communication, direct benefits of research, and effective stakeholder participation, noting that establishing these practices in LMICs can be more of a financial and time burden due to undeveloped or underdeveloped infrastructure.