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A survey on public attitudes toward genetic studies and factors associated with their willingness to participate

公众对基因研究态度及参与意愿影响因素调查

基本信息

批准号：
13670336
负责人：
TANAKA Keitaro
金额：
$ 2.18万
依托单位：
Saga Medical School
依托单位国家：
日本
项目类别：
Grant-in-Aid for Scientific Research (C)
财政年份：
2001
资助国家：
日本
起止时间：
2001 至 2002
项目状态：
已结题

来源：
https://kaken.nii.ac.jp/grant/KAKENHI-PROJECT-13670336/
关键词：
human genetics research attitude survey genetics guidelines informed consent ethical committee genetic privacy インフォームドコンセント

项目摘要

In performing human genetics research, informed consent from study participants is essential, yet public attitudes toward such research remain not fully understood. In this cross-sectional study, we evaluated the following issues : 1) what attitude the Japanese middle-aged or older public have toward human genetics studies, and whether they regard those studies important, 2) to what extent they want explanations as to genetic aspects before they decide to or not to participate, 3) what proportion of them are likely to participate, and 4) whether cooperative people have any characteristics in terms of demography (e.g., sex,. age, occupation) and lifestyle habits (e.g., drinking and smoking). From the roster of Saga City residents, we randomly selected a total of 2,000 people (1,000 men and 1,000 women) who aged 40 to 79 years. as of December 31, 2001. In March 2002, a self-administered questionnaire was sent to them, and 1,338 people (667 men and 671 women) completed and returned the questionnaire, with a response rate of 69% : About 80% of the respondents looked upon human genetics research important. The subjects frequently listed the following items upon which they wanted pertinent explanations : the association between disease and gene, the purpose of the study, the reason why he/she was selected as a candidate, the method of protecting genetic privacy, and the notification of genotyping results. Only. 15% of the subjects answered that they did not require detailed explanations. Regarding. the use of stored human specimens for which genetic testing had not explicitly been approved by examinees, around 60% reported that researchers should use only the specimens for which they could confirm examinees' consent for the research use. Those who were willing to participate in genetics studies accounted for 51 % of the subjects, and such willingness was more prevalent among males, professionals/technicians/administrators, and current drinkers.

在进行人类遗传学研究时，研究参与者的知情同意是必不可少的，但公众对此类研究的态度仍未完全理解。在这项横断面研究中，我们评估了以下问题：1)日本中老年公众对人类遗传学研究的态度，他们是否认为这些研究重要；2)他们在决定参加或不参加之前，希望在多大程度上得到关于遗传学方面的解释；3)他们可能参与的比例；以及4)合作的人在人口统计学方面是否有任何特征(例如，性别、。年龄、职业)和生活习惯(如饮酒和吸烟)。从佐贺市居民的花名册中，我们随机选择了总共2000人(1000名男性和1000名女性)，年龄在40岁到79岁之间。截至2001年12月31日。2002年3月，向他们发出了一份自填式问卷，1338人(667名男性和671名女性)填写并返回了问卷，回复率为69%：约80%的受访者认为人类遗传学研究很重要。受试者经常列出他们想要中肯解释的下列项目：疾病与基因之间的联系、研究的目的、他/她被选为候选人的原因、保护遗传隐私的方法以及基因分型结果的通知。只有这样。15%的受试者回答说他们不需要详细解释。关于..。在使用未经考生明确批准进行基因测试的储存人类标本方面，约60%的人报告说，研究人员只应使用他们能确认考生同意进行研究的标本。愿意参与遗传学研究的人占受试者的51%，这种意愿在男性、专业人员/技术人员/管理人员和目前饮酒的人中更为普遍。