Decruyenaere M, Evers-Kiebooms G, Welkenhuysen M, Bande-Knops J, Van Gerven V, Van den Berghe H
Centre for Human Genetics, University of Leuven, UZ Gasthuisberg, Belgium.
J Med Genet. 1995 Oct;32(10):799-804; discussion 805. doi: 10.1136/jmg.32.10.799.
Advances in genetics create increasing possibilities of diagnosing and preventing genetic disease. In most countries, the community is poorly informed about the role of genetic factors in human disease and about genetic testing and its social, emotional, and ethical implications. School education about genetics may improve this situation. Students are, of course, the adults of the future and the potential users of the new genetic tests. To gain further insight into the perception of genetic risk of adolescents and their perception of the new genetic techniques and as a starting point for setting up an adequate information campaign in Flanders, we assessed the opinions and beliefs of students with regard to health, genetic diseases, genetic risk, and genetic testing. A standardised interview and questionnaire were administered within the scope of the two yearly medical check up of 166 fifth grade students. They were randomly selected from the group of all fifth grade high school students in seven different schools. This paper focuses on the attitudes of adolescents towards obtaining genetic information, towards prenatal diagnosis and pregnancy termination. Adolescents in Flanders are interested in being informed about genetic risks and genetic diseases and in making use of prenatal diagnosis because they want to make informed reproductive decisions in the future and to be emotionally prepared for the birth of an affected child. They adopt a critical attitude towards pregnancy termination. The association between these attitudes and several relevant factors was investigated. This showed significant correlations between some attitudes and general health related prevention, perceived burden of genetic diseases, the importance of the value “own health”, the perceived role of society, and the regularity of religious practice. Some points for special attention were formulated with regard to information campaigns for adolescents.
遗传学的进展为诊断和预防遗传疾病创造了越来越多的可能性。在大多数国家，公众对遗传因素在人类疾病中的作用、基因检测及其社会、情感和伦理影响了解甚少。关于遗传学的学校教育可能会改善这种状况。当然，学生是未来的成年人，也是新型基因检测的潜在使用者。为了进一步深入了解青少年对遗传风险的认知以及他们对新基因技术的认知，并作为在佛兰德开展适当宣传活动的起点，我们评估了学生对健康、遗传疾病、遗传风险和基因检测的看法和信念。在对166名五年级学生进行的两年一次的体检范围内，进行了标准化访谈和问卷调查。他们是从七所不同学校的所有五年级高中生中随机挑选出来的。本文重点关注青少年对获取遗传信息、产前诊断和终止妊娠的态度。佛兰德的青少年有兴趣了解遗传风险和遗传疾病，并希望利用产前诊断，因为他们希望在未来做出明智的生育决定，并在情感上为生下患病儿童做好准备。他们对终止妊娠持批判态度。研究了这些态度与几个相关因素之间的关联。结果表明，一些态度与一般健康相关预防、感知到的遗传疾病负担、“自身健康”价值观的重要性、对社会作用的认知以及宗教活动的规律性之间存在显著相关性。针对青少年宣传活动提出了一些特别需要关注的要点。
