دورية أكاديمية

Nigerian parents' perspectives on genetic testing in their children with genetic eye diseases.

التفاصيل البيبلوغرافية
العنوان: Nigerian parents' perspectives on genetic testing in their children with genetic eye diseases.
المؤلفون: Monye HI; Department of Ophthalmology, University College Hospital, Ibadan, Nigeria.; Eleta Eye Institute, Ibadan, Nigeria., Olawoye OO; Department of Ophthalmology, University College Hospital, Ibadan, Nigeria. solaolawoye@yahoo.com.; Department of Ophthalmology, College of Medicine, University of Ibadan, Ibadan, Nigeria. solaolawoye@yahoo.com., Ugalahi MO; Department of Ophthalmology, University College Hospital, Ibadan, Nigeria.; Department of Ophthalmology, College of Medicine, University of Ibadan, Ibadan, Nigeria., Oluleye TS; Department of Ophthalmology, University College Hospital, Ibadan, Nigeria.; Department of Ophthalmology, College of Medicine, University of Ibadan, Ibadan, Nigeria.
المصدر: Journal of community genetics [J Community Genet] 2023 Aug; Vol. 14 (4), pp. 387-394. Date of Electronic Publication: 2023 Jul 27.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: Springer Country of Publication: Germany NLM ID: 101551501 Publication Model: Print-Electronic Cited Medium: Print ISSN: 1868-310X (Print) Linking ISSN: 1868310X NLM ISO Abbreviation: J Community Genet Subsets: PubMed not MEDLINE
أسماء مطبوعة: Original Publication: Heidelberg : Springer
مستخلص: The decision for genetic testing in children is usually taken by their parents or caregivers, and may be influenced by sociocultural and ethical concerns. This study evaluateds the perspectives of Nigerian parents towards genetic testing of their children with genetic eye diseases parental willingness for genetic testing in their children, and its determinants, in a hospital setting in Nigeria. This cross-sectional, hospital-based study was conducted at the Eye clinic, University College Hospital, Ibadan. The participants were 42 parents of children with genetic eye diseases purposively recruited from April to July 2021. The main variables of interest were overall willingness to test, and willingness to test given ten different scenarios. Summary statistics were performed, and determinants of willingness to test (parental sociodemographic and children's clinical characteristics) were assessed using Fischer's exact test. All the participants expressed willingness to test when presented with six of the ten scenarios.However, slightly fewer (83-95%) proportions were willing to test for the other four scenarios (out-of-pocket payment, if test will reveal a systemic association, if test may confirm a diagnosis with no current treatment, and prenatal testing). Willingness to test was not significantly associated with the determinants tested. Thirty-nine (93%) would join a support group, 38 (91%) would inform a family member at risk, and 28 (67%) would be unwilling to have more children if there wais a risk to future offspring. This study demonstrated a high degree of parental willingness for genetic testing of their children. This is important evidence that can guide policy and planning of ophthalmic genetics services.
(© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)
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معلومات مُعتمدة: United Kingdom WT_ Wellcome Trust
فهرسة مساهمة: Keywords: Decision making; Genetic eye diseases; Genetic testing in children; Parent; Perspectives; Prenatal diagnosis
تواريخ الأحداث: Date Created: 20230727 Latest Revision: 20230825
رمز التحديث: 20240829
مُعرف محوري في PubMed: PMC10444708
DOI: 10.1007/s12687-023-00658-8
PMID: 37498433
قاعدة البيانات: MEDLINE
الوصف
تدمد:1868-310X
DOI:10.1007/s12687-023-00658-8