Department of Sustainable Health Science, Center for Preventive Medical Sciences, Chiba University, 1-33 Yayoi-cho, Inage-ku, Chiba, 263-8522, Japan.
Department of Nutrition and Metabolic Medicine, Center for Preventive Medical Sciences, Chiba University, 1-33 Yayoi-cho, Inage-ku, Chiba, 263-8522, Japan.
J Hum Genet. 2021 Jul;66(7):671-679. doi: 10.1038/s10038-020-00894-7. Epub 2021 Jan 25.
To conduct a long-term birth cohort study that includes genetic analysis, it is crucial to understand the attitudes of participants to genetic analysis and then take appropriate approaches for addressing their ambiguous and negative attitudes. This study aimed to explore participants' attitudes toward genetic analysis and associated background factors among mothers who were enrolled in a large Japanese birth cohort. A questionnaire was sent to participants' households, and the responses of 1762 mothers (34.0%) were used for the study. The majority of mothers recognized genetic analysis for themselves and their children and sharing of genetic data as beneficial. A low knowledge level of genomic terminology was associated with ambiguous attitudes toward genetic analysis and data sharing. Education level was positively associated with the recognition of the benefits of genetic analysis. Concern about handling genetic information was associated with the unacceptability of data sharing. Trust was associated with the approval of genetic analysis. Most mothers preferred that genetic analysis results be returned. These findings suggest the need for multiple efforts to maximize participants' acceptance of genetic analysis, such as utilizing an educational approach to encourage familiarity with genetics/genomics, optimizing explanations for different educational levels, and explicitly disclosing the handling policy for genetic information.
为了开展包含基因分析的长期出生队列研究,了解参与者对基因分析的态度,并采取适当的方法来解决他们模糊和负面的态度至关重要。本研究旨在探讨参加日本大型出生队列研究的母亲对基因分析的态度以及相关的背景因素。向参与者的家庭发送了一份问卷,其中 1762 位母亲(34.0%)的回答被用于研究。大多数母亲认为自己和孩子的基因分析以及基因数据共享是有益的。对基因组术语的知识水平较低与对基因分析和数据共享的模糊态度有关。教育程度与对基因分析益处的认识呈正相关。对遗传信息处理的关注与对数据共享的不可接受性有关。信任与基因分析的批准有关。大多数母亲希望返回基因分析结果。这些发现表明需要采取多种措施来最大限度地提高参与者对基因分析的接受程度,例如利用教育方法鼓励对遗传学/基因组学的熟悉程度,针对不同教育水平优化解释,并明确披露遗传信息的处理政策。