Iris S Delgado, Abigail Outterson, Vaishnavi Ramesh, Alda Gabriela Amador Sanchez, Alfonso César Boza, Damaris Lopez-Pilarte, Juan José Amador Velázquez, David J Friedman, Daniel R Brooks, Madeleine K Scammell, Catharine Wang
Genetic research presents numerous ethical, legal, and social implications (ELSI), particularly when the research involves collaborations between investigators in high and low-income countries. Some ELSI issues are universal, and others are specific to context and culture. This study investigates perceptions of genetic research in Nicaragua, Central America, where local and U.S. based researchers have collaborated for over a decade. A total of 43 residents from northwestern Nicaragua, a region with high mortality rates attributed to chronic kidney disease of non-traditional causes (CKDnt), were interviewed, including research participants in ongoing studies (n = 36), health professionals (n = 3), labor leaders (n = 2), and family members of research participants (n = 2)...
December 5, 2023: European Journal of Human Genetics: EJHG