Henneman Lidewij, Timmermans Danielle R M, van der Wal Gerrit
Department of Social Medicine, Institute for Research in Extramural Medicine, VU University Medical Center, Amsterdam, The Netherlands.
Community Genet. 2004;7(1):33-43. doi: 10.1159/000080302.
The objectives of this study were (1) to explore public experiences, genetic knowledge, expectations of future medical genetic developments, and the attitudes towards the use of genetic information, and (2) to determine whether there are subject characteristics associated with these variables.
Participants (n = 1,308, age > or = 25 years) of a Dutch consumer panel were sent a questionnaire, specifically designed for this study.
Response was 63% (817/1,308). A minority of respondents reported to know someone with a hereditary disease (34%) or to have used a genetic test (8%). Overall, 57% perceived a lack of genetic knowledge. In multivariate analyses, high self-rated knowledge, younger age, having heard of genetic testing, high educational level, female gender, having children living at home, being a health professional, and familiarity with genetic testing were positively associated with genetic knowledge. Future expectations of the consequences of developments in medical genetics varied between the subjects. The great majority expected great benefits for medical practice such as an increasing use of genetic aspects of disease for diagnosis or prevention. One fifth, mainly older people, anticipated a negative impact of genetic developments on society. The results also show that most people are reserved to share their genetic information with others, especially with regard to the wider public domain (e.g. industry and insurers) and employers. Remarkably, respondents were more willing to share their genetic information with scientific researchers (68%) than with their relatives (54%).
This study suggests that although one fifth anticipates negative consequences of genetic developments, the great majority has high expectations about the increasing use of genetics in prevention, diagnosis and treatment of diseases. In developing educational programmes about genetic innovations in medicine, policymakers will have to take into account pre-existing lay knowledge, views and expectations of different groups of citizens towards these developments.
本研究的目的是：（1）探索公众的经历、遗传知识、对未来医学遗传学发展的期望以及对遗传信息使用的态度；（2）确定是否存在与这些变量相关的个体特征。
向荷兰一个消费者小组的参与者（n = 1308，年龄≥25岁）发送了一份专门为本研究设计的问卷。
回复率为63%（817/1308）。少数受访者报告称认识患有遗传病的人（34%）或使用过基因检测（8%）。总体而言，57%的人认为自己缺乏遗传知识。在多变量分析中，自我评估知识水平高、年龄较小、听说过基因检测、教育水平高、女性、有孩子在家居住、是卫生专业人员以及熟悉基因检测与遗传知识呈正相关。受试者对医学遗传学发展后果的未来期望各不相同。绝大多数人预计医学实践将带来巨大益处，例如更多地利用疾病的遗传因素进行诊断或预防。五分之一的人，主要是老年人，预计遗传发展会对社会产生负面影响。结果还表明，大多数人不愿意与他人分享自己的遗传信息，尤其是在更广泛的公共领域（如企业和保险公司）以及雇主方面。值得注意的是，受访者更愿意与科研人员分享他们的遗传信息（68%），而不是与亲属分享（54%）。
本研究表明，尽管五分之一的人预计遗传发展会带来负面后果，但绝大多数人对遗传学在疾病预防、诊断和治疗中的更多应用抱有很高期望。在制定关于医学遗传创新的教育计划时，政策制定者必须考虑到不同公民群体对这些发展已有的外行知识、观点和期望。
