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Patient and parental attitudes toward genetic screening and its implications at an adult cystic fibrosis centre.成人囊性纤维化中心患者及其父母对基因筛查及其影响的态度。
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普通人群及严重遗传病患者亲属对基因检测的态度:一项来自芬兰的调查。

Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: a survey from Finland.

作者信息

Hietala M, Hakonen A, Aro A R, Niemelä P, Peltonen L, Aula P

机构信息

Department of Medical Genetics, University of Turku, Finland.

出版信息

Am J Hum Genet. 1995 Jun;56(6):1493-500.

PMID:7762573
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC1801087/
Abstract

In the present study we explore the attitudes of the Finnish population toward genetic testing by conducting a questionnaire study of a stratified sample of the population as well as of family members of patients with a severe hereditary disease, aspartylglucosaminuria (AGU). The questionnaire evaluated attitudes toward gene tests in general and also respondents' preparedness to undergo gene tests for predictive testing, carrier detection, prenatal diagnosis, and selective abortion, in theoretical situations. The results of the study indicate that both the Finnish population in general and family members of AGU patients have a favorable attitude toward genetic testing. However, a commonly expressed reason against testing was that test results might lead to discrimination in employment or insurance policies. Based on the responses, we predict that future genetic testing programs will most probably be met with a high acceptance rate by the Finnish population.

摘要

在本研究中,我们通过对芬兰人口的分层样本以及患有严重遗传性疾病——天冬氨酰葡糖胺尿症(AGU)患者的家庭成员进行问卷调查,来探究芬兰民众对基因检测的态度。该问卷评估了人们对基因检测总体上的态度,以及受访者在理论情况下接受用于预测性检测、携带者检测、产前诊断和选择性流产的基因检测的意愿。研究结果表明,芬兰普通民众和AGU患者的家庭成员对基因检测均持积极态度。然而,一个普遍表达的反对检测的理由是检测结果可能会导致在就业或保险政策方面受到歧视。基于这些回答,我们预测未来的基因检测项目很可能会被芬兰民众高度接受。