Facing Genetics: Family Explanatory Models and Genomic Literacy in Cleft Care in Colombia

ObjectiveTo describe the perspectives and experiences of urban Latin American families impacted by orofacial clefts, with particular attention to how families understand genetics, heredity, and genetic testing.DesignQualitative investigation using thematic content analysis of semistructured interviews.SettingAn interdisciplinary orofacial cleft care program at a pediatric hospital in Medellín, Colombia, providing long-term, family-centered cleft care.Patients, ParticipantsAdult parents/caregivers representing 20 families (N = 20) with at least 1 child receiving care for nonsyndromic cleft lip with or without cleft palate.InterventionsIn-person, semistructured interviews that were audio-recorded with oral informed consent.Main Outcome Measure(s)Interview domains included demographic characteristics, explanatory models of cleft conditions, perspectives related to genetics, and attitudes toward genetic testing.ResultsFamilies commonly identified multiple perceived causes of cleft formation, including maternal exposures, heredity/genetics, and divine intervention. Eighteen families (90%) described family relationships as their primary framework for understanding genetics. Fourteen families (70%) expressed fears related to heredity, frequently influencing family planning decisions. Only 5 families (25%) had accessed genetic testing or counseling, yet all families expressed interest in genetic testing if it were available.ConclusionsFamilies integrated biomedical, environmental, and spiritual explanations into their understanding of cleft conditions. Genomic literacy and fears about heredity shaped family communication and reproductive decision making. Interdisciplinary, family-centered cleft care fostered trust and positioned clinical teams as key mediators of genetic information, underscoring the influence of clinical communication on how families interpret genetic risk and approach future family planning.