Gemmell Amber P, Veach Patricia McCarthy, MacFarlane Ian, Riesgraf Rachel, LeRoy Bonnie S
Simmons Comprehensive Cancer Center, UTSouthwestern Medical Center, Dallas, TX, USA.
Department of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.
J Genet Couns. 2017 Dec;26(6):1357-1371. doi: 10.1007/s10897-017-0121-8. Epub 2017 Jun 14.
Few studies have explored the public's views of genetic counseling services, and even fewer focus on founder populations with high prevalence of genetic disease, such as Hutterites. The Hutterites are an Anabaptist religious group grounded in a strong Christian faith. The primary aim of this study was to assess Hutterites' views of genetic counseling services. A secondary aim was to compare their views to those obtained in a study of rural Midwestern U.S. residents (Riesgraf et al., Journal of Genetic Counseling, 24(4), 565-579, 2015). One-hundred eleven individuals from southern Manitoba Hutterite colonies completed an anonymous survey assessing familiarity with and attitudes about genetic counseling; perceptions of its purpose, scope and practice; and willingness to use genetic counseling services. Although many respondents were not familiar with genetic counseling, most had accurate perceptions and positive attitudes. For instance, mean ratings showed endorsement of trust in information provided by genetic counselors and agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had a higher self-rated familiarity with genetic counseling; were younger; agreed with the statement: I would trust the information provided by a genetic counselor; and disagreed with the statements: Genetic counseling is only useful for a small group of people with rare diseases, and Genetic counselors help expectant parents choose the eye color of their child. Thematic analysis of comments regarding willingness to use genetic counseling services yielded themes of personal/family risk, pragmatism (genetic counseling is sensible and practical for managing health concerns), and desire to prevent genetic conditions in the Hutterite population. Comparison of the present findings to those of Riesgraf et al. suggests predictors of Hutterites' willingness to use genetic counseling are unique and culturally-based. Limited replication of Riesgraf et al. was achieved. Additional findings, practice implications and research recommendations are presented.
很少有研究探讨公众对遗传咨询服务的看法，而关注遗传病高发的创始人群体（如哈特派）的研究则更少。哈特派是一个浸信会宗教团体，秉持坚定的基督教信仰。本研究的主要目的是评估哈特派对遗传咨询服务的看法。次要目的是将他们的看法与一项针对美国中西部农村居民的研究结果进行比较（里斯格拉夫等人，《遗传咨询杂志》，2015年第24卷第4期，第565 - 579页）。来自曼尼托巴省南部哈特派聚居地的111人完成了一项匿名调查，该调查评估了他们对遗传咨询的熟悉程度和态度；对其目的、范围和实践的认知；以及使用遗传咨询服务的意愿。尽管许多受访者对遗传咨询并不熟悉，但大多数人有准确的认知和积极的态度。例如，平均评分显示受访者认可对遗传咨询师提供信息的信任，并认同遗传咨询符合他们的价值观。逻辑回归分析表明，如果受访者符合以下条件，其报告的使用遗传咨询服务的意愿会增加：对遗传咨询的自我评分熟悉程度更高；年龄更小；同意“我会信任遗传咨询师提供的信息”这一说法；不同意“遗传咨询仅对一小部分患有罕见疾病的人有用”以及“遗传咨询师帮助准父母选择孩子眼睛颜色”这两种说法。对关于使用遗传咨询服务意愿的评论进行主题分析，得出了个人/家庭风险、实用主义（遗传咨询对于处理健康问题是明智且实用的）以及预防哈特派人群遗传疾病的愿望等主题。将本研究结果与里斯格拉夫等人的研究结果进行比较表明，哈特派使用遗传咨询服务意愿的预测因素是独特且基于文化的。对里斯格拉夫等人的研究进行了有限的重复。文中还呈现了其他研究结果、实践意义及研究建议。
