Journal article
Facing Genetics: Family Explanatory Models and Genomic Literacy in Cleft Care in Colombia
The Cleft palate-craniofacial journal
09/02/2026
DOI: 10.1177/10556656261476130
PMID: 42685752
Abstract
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 (
= 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.
Details
- Title: Subtitle
- Facing Genetics: Family Explanatory Models and Genomic Literacy in Cleft Care in Colombia
- Creators
- Tabitha K Peter - University of IowaCamila Osorio - Clínica SomerMartha Jaramillo Molina - Fundación Clínica Noel, Medellín, Antioquia, ColombiaClaudia P Restrepo Muñeton - Fundación Clínica Noel, Medellín, Antioquia, ColombiaLina M Moreno Uribe - University of Iowa
- Resource Type
- Journal article
- Publication Details
- The Cleft palate-craniofacial journal
- DOI
- 10.1177/10556656261476130
- PMID
- 42685752
- NLM abbreviation
- Cleft Palate Craniofac J
- ISSN
- 1545-1569
- eISSN
- 1545-1569
- Publisher
- SAGE PUBLICATIONS INC
- Grant note
- University of Iowa Global Public Health Research Grant Fulbright US Student Program University of Iowa Institute for Oral Health Research University of Iowa Department of Orthodontics
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the University of Iowa Global Public Health Research Grant, the University of Iowa Institute for Oral Health Research, the Fulbright US Student Program in collaboration with El Instituto Colombiano de Credito Educativo y Estudios Tecnicos en el Exterior (ICETEX), and the University of Iowa Department of Orthodontics.
- Language
- English
- Electronic publication date
- 09/02/2026
- Academic Unit
- Orthodontics; Craniofacial Anomalies Research Center
- Record Identifier
- 9985222747802771
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