Negotiating Genetic Risk: Tunisian Adolescents’ Attitudes Toward Marriage, Reproduction, and Hereditary Blood Disorders

Hemoglobinopathies, such as sickle cell disease and β-thalassemia, pose a significant public health challenge in Tunisia. Effective prevention relies on informed reproductive choices shaped by genetic knowledge, socio-cultural norms, emotional bonds, and religious beliefs. This study explores how Tunisian high school students perceive genetic risk in relation to marriage and reproduction following a contextualized educational session on sickle cell disease. A qualitative cross-sectional survey was conducted among 158 final-year science students (aged 17–22, 78% female) in two public schools. Participants responded to three hypothetical scenarios involving sickle cell disease and one open-ended question on abortion. Quantitative data were analyzed descriptively, and qualitative responses were thematically coded in NVivo. Students demonstrated basic genetic understanding, though misconceptions about carrier status persisted. Emotional attachment frequently outweighed genetic considerations: 58% (92/158) were open to marrying a partner with homozygous sickle cell disease, and 83% (131/158) to marrying a heterozygous carrier. Attitudes toward abortion were strongly influenced by religious values, with 54% (85/158) disagreeing with a couple’s decision not to terminate an affected pregnancy. Consanguinity did not arise spontaneously in responses. These post-exposure, scenario-conditioned findings, collected immediately after an educational session featuring patient narratives, are hypothesis-generating. They highlight the need for genetics education that integrates ethical, emotional, and culturally relevant discussions and underscore the importance of further research on unprompted attitudes.

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Publication Details

Journal
Figshare
Published
2026-11-04
DOI
https://doi.org/10.6084/m9.figshare.34911671
Primary Topic
Hemoglobinopathies and Related Disorders
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article
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article

Negotiating Genetic Risk: Tunisian Adolescents’ Attitudes Toward Marriage, Reproduction, and Hereditary Blood Disorders

Inès Safra, Imen Moumni, Foued Maaoui, Samia Mnif
Figshare
Hemoglobinopathies and Related Disorders
article

Negotiating Genetic Risk: Tunisian Adolescents’ Attitudes Toward Marriage, Reproduction, and Hereditary Blood Disorders

Inès Safra, Imen Moumni, Foued Maaoui, Samia Mnif
article en

Abstract

Hemoglobinopathies, such as sickle cell disease and β-thalassemia, pose a significant public health challenge in Tunisia. Effective prevention relies on informed reproductive choices shaped by genetic knowledge, socio-cultural norms, emotional bonds, and religious beliefs. This study explores how Tunisian high school students perceive genetic risk in relation to marriage and reproduction following a contextualized educational session on sickle cell disease. A qualitative cross-sectional survey was conducted among 158 final-year science students (aged 17–22, 78% female) in two public schools. Participants responded to three hypothetical scenarios involving sickle cell disease and one open-ended question on abortion. Quantitative data were analyzed descriptively, and qualitative responses were thematically coded in NVivo. Students demonstrated basic genetic understanding, though misconceptions about carrier status persisted. Emotional attachment frequently outweighed genetic considerations: 58% (92/158) were open to marrying a partner with homozygous sickle cell disease, and 83% (131/158) to marrying a heterozygous carrier. Attitudes toward abortion were strongly influenced by religious values, with 54% (85/158) disagreeing with a couple’s decision not to terminate an affected pregnancy. Consanguinity did not arise spontaneously in responses. These post-exposure, scenario-conditioned findings, collected immediately after an educational session featuring patient narratives, are hypothesis-generating. They highlight the need for genetics education that integrates ethical, emotional, and culturally relevant discussions and underscore the importance of further research on unprompted attitudes.

Figshare
Openalex Percentile: Top 14%
Hemoglobinopathies and Related Disorders
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Negotiating Genetic Risk: Tunisian Adolescents’ Attitudes Toward Marriage, Reproduction, and Hereditary Blood Disorders — Inès Safra, Imen Moumni, et al. · Figshare (2026) | TGRS Research Map | TGRS