Miyamoto Keiko, Iwakuma Miho, Nakayama Takeo
Department of Medical Communication, Kyoto University School of Public Health, Yoshidakonoe-cho, Sakyo-ku, Kyoto, #6068501, Japan.
Department of Health Infomatics, Kyoto University School of Public Health, Yoshidakonoe-cho, Sakyo-ku, Kyoto, #6068501, Japan.
BMC Med Genomics. 2016 Mar 15;9:14. doi: 10.1186/s12920-016-0175-8.
Because of the rapid development in genomics, more research findings have emerged. However, the association between society and research results remains controversial. This article examines the experiences and attitudes of residents regarding a community-based genomic cohort study.
This study was conducted as a part of the health survey of the City Health Promotion section. At the conclusion of the first stage of the project, a self-administered questionnaire was mailed to a random sample of 2,500 residents in 2012.
The response rate was 59 % (n = 1477/2500). The findings show that 70 % of males and 50 % of females knew nothing about the project. Females and elderly people were more likely to have knowledge of the study, indicating that self-rated understanding of the terminology is statistically associated with the level of awareness regarding the project. In addition, those who were aware of the project were also aware of the benefits of research utilizing genetic information, whereas unaware respondents, particularly males, believed that unexpected negative effects may occur. Those with higher self-rated understanding of the terminology and higher awareness of benefit of the research utilizing genetic information had more positive attitudes toward undergoing drug susceptibility genetic testing, indicating that the awareness of project in females and concerns toward genetic research are not statistically associated with the willingness to undergo.
This study suggests that a community-based genome cohort project helps raise awareness of benefit of genetic research and that knowledge, however, does not directly affect the willingness to participate in related activities, such as drug susceptibility genetic testing. Therefore, additional research that focuses on the circular relationship between risk and action must be conducted in the future.
由于基因组学的快速发展，出现了更多的研究成果。然而，社会与研究结果之间的关联仍存在争议。本文探讨了居民对一项基于社区的基因组队列研究的经历和态度。
本研究作为城市健康促进部门健康调查的一部分进行。在项目第一阶段结束时，2012年向2500名居民的随机样本邮寄了一份自填式问卷。
回复率为59%（n = 1477/2500）。研究结果表明，70%的男性和50%的女性对该项目一无所知。女性和老年人更有可能了解该研究，这表明对术语的自评理解与对该项目的认知水平在统计学上相关。此外，了解该项目的人也了解利用基因信息进行研究的益处，而不了解的受访者，尤其是男性，认为可能会出现意想不到的负面影响。对术语自评理解较高且对利用基因信息进行研究的益处认知较高的人对进行药物敏感性基因检测的态度更为积极，这表明女性对项目的认知和对基因研究的担忧与参与意愿在统计学上无关。
本研究表明，基于社区的基因组队列项目有助于提高对基因研究益处的认识，然而，知识并不会直接影响参与相关活动的意愿，如药物敏感性基因检测。因此，未来必须开展更多关注风险与行动之间循环关系的研究。
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