尼日利亚父母对患有遗传性眼病的孩子进行基因检测的看法。

IF 1.5 Q4 GENETICS & HEREDITY
Henrietta Ifechukwude Monye, Olusola Oluyinka Olawoye, Mary Ogbenyi Ugalahi, Tunji Sunday Oluleye
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引用次数: 0

摘要

对儿童进行基因检测的决定通常由其父母或照顾者作出,并可能受到社会文化和伦理问题的影响。本研究评估了尼日利亚父母对其患有遗传性眼病的子女进行基因检测的观点,以及父母在尼日利亚医院环境中对其子女进行基因检测的意愿及其决定因素。这项以医院为基础的横断面研究是在伊巴丹大学学院医院眼科诊所进行的。参与者是42名遗传性眼病儿童的父母,于2021年4月至7月有意招募。兴趣的主要变量是测试的总体意愿,以及在十种不同情况下的测试意愿。进行汇总统计,并使用Fischer精确检验评估测试意愿的决定因素(父母社会人口学和儿童临床特征)。所有的参与者在面对10个场景中的6个时都表示愿意测试。然而,愿意检测其他四种情况的比例略少(83-95%)(自费,如果检测将揭示系统性关联,如果检测可以确认诊断而无需当前治疗,以及产前检测)。测试的意愿与测试的决定因素没有显著相关。39人(93%)会加入支持小组,38人(91%)会告知有风险的家庭成员,28人(67%)如果对未来的后代有风险,就不愿意生育更多的孩子。这项研究表明,父母对孩子进行基因检测的意愿很高。这为指导眼科遗传学服务的政策和规划提供了重要依据。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Nigerian parents' perspectives on genetic testing in their children with genetic eye diseases.

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.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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