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公众对遗传学和基因检测的看法:对比利时普通公众的一项调查。

Public Views on Genetics and Genetic Testing: A Survey of the General Public in Belgium.

作者信息

Chokoshvili Davit, Belmans Carmen, Poncelet Roxanne, Sanders Sofie, Vaes Deborah, Vears Danya, Janssens Sandra, Huys Isabelle, Borry Pascal

机构信息

1 Department of Public Health and Primary Care, Centre for Biomedical Ethics and Law, University of Leuven, Leuven, Belgium .

2 Centre for Medical Genetics Ghent, University Hospital Ghent , Ghent, Belgium .

出版信息

Genet Test Mol Biomarkers. 2017 Mar;21(3):195-201. doi: 10.1089/gtmb.2016.0418.

Abstract

AIMS

To explore the views of the Belgian public on various topics surrounding genetics and genetic testing (GT).

MATERIALS AND METHODS

A written questionnaire was administered to visitors of the annual cartoon festival in Knokke-Heist, Belgium, during the summer of 2014. The main theme of the festival was challenges and progress in human genetics and it was attended by more than 100,000 visitors.

RESULTS

The survey was completed by 1182 respondents, resulting in a demographically diverse sample with a mean age of 48.5 years. Our respondents expressed moderate interest in predictive GT, with 39.1% willing to learn about their predisposition to diseases through GT and 49.5% indicating interest in getting tested exclusively for treatable/preventable diseases. We observed higher interest in GT for reproductive purposes, such as preconception screening for recessive disorders (53.8%) and prenatal GT (60.7%). A substantial minority (46.4%) of the respondents were worried that GT could further stigmatize people with disabilities, while 39.7% believed that carrier screening for recessive diseases would lead to an inferior image of people affected by them.

CONCLUSION

Paying due attention to the attitudes, beliefs, and concerns of the general public is important to ensure ethically sound and socially acceptable implementation of new genetic technologies.

摘要

目的

探讨比利时公众对围绕遗传学和基因检测(GT)的各种话题的看法。

材料与方法

2014年夏天,对比利时诺克海斯特年度卡通节的参观者进行了书面问卷调查。该节日的主题是人类遗传学的挑战与进展,有超过10万名参观者参加。

结果

1182名受访者完成了调查,形成了一个人口统计学上多样化的样本,平均年龄为48.5岁。我们的受访者对预测性基因检测表现出适度兴趣,39.1%的人愿意通过基因检测了解自己患疾病的易感性,49.5%的人表示有兴趣仅针对可治疗/可预防的疾病进行检测。我们观察到对用于生殖目的的基因检测有更高的兴趣,如对隐性疾病的孕前筛查(53.8%)和产前基因检测(60.7%)。相当一部分少数受访者(46.4%)担心基因检测会进一步给残疾人带来污名,而39.7%的人认为对隐性疾病的携带者筛查会导致受其影响的人的形象变差。

结论

充分关注公众的态度、信念和担忧对于确保新基因技术在伦理上合理且在社会上可接受的实施非常重要。

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