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对基因检测及信息的态度:为人父母会影响观点吗?

Attitudes towards genetic testing and information: does parenthood shape the views?

作者信息

Saastamoinen Antti, Hyttinen Virva, Kortelainen Mika, Aaltio Juho, Auranen Mari, Ylikallio Emil, Lönnqvist Tuula, Sainio Markus, Suomalainen Anu, Tyynismaa Henna, Isohanni Pirjo

机构信息

Finnish Competition and Consumer Authority, Helsinki, Finland.

VATT Institute for Economic Research, PO Box 1279, 00100, Helsinki, Finland.

出版信息

J Community Genet. 2020 Oct;11(4):461-473. doi: 10.1007/s12687-020-00462-8. Epub 2020 Apr 4.

Abstract

This study examines how parents of pediatric patients might differ in their views and attitudes towards genetic technology and information when compared to adult patients. There is surprisingly little evidence on how parents compare to other parts of population in their attitudes. Previous empirical studies often relate health-related preferences and attitudes to factors such as age, education, and income instead of parental status, thus evading comparison of parents to others as health-related decision makers. Findings related to the parental status can be useful when implementing genetic technology in clinical practice. We conducted a survey of views on genetic technology and information for groups of adult neurology patients (n = 68) and parents of pediatric neurology patients (n = 31) to shed some light on this issue. In addition to our own survey instrument, we conducted other surveys to gain insight on psychosocial factors that might affect these attitudes. The results suggest that parents are more concerned about their children's genetic risk factors when compared to the attitudes of adult patients about their own risk. For both groups, negative emotional state was associated with more concerns towards genetic information. Our study provides insights on how parental views might affect the acceptance of genetic technology and information.

摘要

本研究探讨了与成年患者相比,儿科患者的父母在对基因技术和信息的看法及态度上可能存在哪些差异。令人惊讶的是,关于父母在态度方面与其他人群相比的情况,证据少之又少。以往的实证研究往往将与健康相关的偏好和态度与年龄、教育程度和收入等因素联系起来,而非与父母身份联系起来,因此回避了将父母作为与健康相关的决策者与其他人进行比较。在临床实践中应用基因技术时,与父母身份相关的研究结果可能会很有用。我们对成年神经科患者组(n = 68)和儿科神经科患者的父母组(n = 31)进行了一项关于基因技术和信息看法的调查,以阐明这一问题。除了我们自己的调查问卷外,我们还进行了其他调查,以深入了解可能影响这些态度的社会心理因素。结果表明,与成年患者对自身风险的态度相比,父母更关心孩子的基因风险因素。对两组而言,负面情绪状态都与对基因信息的更多担忧相关。我们的研究提供了关于父母观点可能如何影响对基因技术和信息接受度的见解。

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