School of Pharmacy/Toxicology, Faculty of Health Sciences, University of Eastern Finland, Kuopio, Finland,
Functional Foods Forum, Faculty of Medicine, University of Turku, Turku, Finland.
Public Health Genomics. 2021;24(1-2):33-43. doi: 10.1159/000512640. Epub 2021 Jan 22.
The aim of this study was to gain insight into the understanding of genetics and perceptions on the ethical issues related to genotype disclosure of the participants in a nutrigenetic study.
A close-ended questionnaire was developed based on literature and discussions among the research group members. The questionnaire contained a -total of 33 questions, which were divided into 4 categories - demographics, knowledge assessment, concerns related to participation, and opinions on disclosure of information. Majority of the participants (250 out of 281) of a nutrigenetic study, in which effect of disclosing APOE allele status on lifestyle changes was studied, completed the questionnaire online following the informed consent process. The responses from the knowledge assessment and the concern categories were transformed into knowledge and concern scales, respectively, and analysed by descriptive statistical methods. The statistical associations between the categorical variables were determined using χ2 test of independence. The relationship between the continuous variables was assessed using Pearson product-moment correlation coefficient and internal consistency of questions by Cronbach's alpha.
No correlation was observed between the level of education and knowledge scores. About 10% of the participants thought that the genetic predisposition would be stressful to them and their family members.
Careful distribution of information before a nutrigenetic study supports understanding and reduces concerns of genetic susceptibility. In Finland, strong basic education is likely to have strengthened the trust in research process.
本研究旨在深入了解参与者对营养遗传学研究中基因型披露的遗传学理解和伦理问题的看法。
根据文献和研究小组成员之间的讨论，开发了一份封闭式问卷。问卷共包含 33 个问题，分为 4 类 - 人口统计学、知识评估、与参与相关的问题以及对信息披露的看法。在一项营养遗传学研究中，研究了披露 APOE 等位基因状态对生活方式改变的影响，该研究的大多数参与者（281 名中的 250 名）在知情同意过程后在线完成了问卷。知识评估和关注类别的回答分别转化为知识和关注量表，并采用描述性统计方法进行分析。使用独立性 χ2 检验确定分类变量之间的统计关联。使用 Pearson 积矩相关系数评估连续变量之间的关系，并使用 Cronbach's alpha 评估问题的内部一致性。
教育水平与知识得分之间没有相关性。约 10%的参与者认为遗传易感性会给他们自己和家人带来压力。
在营养遗传学研究之前仔细分配信息有助于理解并减少对遗传易感性的担忧。在芬兰，强大的基础教育可能增强了对研究过程的信任。
