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α-1抗胰蛋白酶缺乏症夫妇的基因决定论信念与基因感知控制中的一致-不一致模式:对临床和公共卫生基因组沟通的启示

Congruence-Incongruence Patterns in Alpha-1 Antitrypsin Deficiency Couples' Genetic Determinist Beliefs and Perceived Control over Genes: Implications for Clinical and Public Health Genomic Communication.

作者信息

Parrott Roxanne L, Smith Rachel A, Hong Soo Jung, Worthington Amber

机构信息

Communication Arts and Sciences, The Pennsylvania State University, University Park, PA, USA,

出版信息

J Genet Couns. 2015 Jun;24(3):532-40. doi: 10.1007/s10897-014-9786-4. Epub 2014 Nov 21.

Abstract

Genomics makes possible the isolation of multiple genes as co-factors that increase, but do not determine, risk for many adult-onset medical conditions, including alpha-1 antitrypsin deficiency (AATD). Those diagnosed with an adult-onset medical condition, such as AATD, are often married and make decisions about testing and care as a couple. We examined genetic essentialist and threat beliefs, focusing on beliefs about the genetic contribution to disease susceptibility and severity, as well as perceptions of control related to genes and health for married couples (N =59), in which one spouse has been tested for genetic mutations associated with AATD. The intraclass correlation for spouses' beliefs about genetic essentialism was strong and statistically significant, but the associations for their other beliefs were not. Incongruence between AATD participants and their spouses regarding genes' influence on disease severity directly related to incongruent perceptions of control and genetic contribution to disease susceptibility. Results revealed an inverse relationship to AATD participants' perceptions of behavioral control and a direct relationship to their beliefs about genes' influence on disease severity. This suggests a pattern of incongruence in which AATD participants have low levels of perceived control over genes' influence on health and high levels of perceived genetic influence on disease severity compared to spouses. With public health communication efforts lagging behind the science of genomics, insights regarding the congruence or incongruence associated with married couples' beliefs about genes' influence on disease afford pathways to guide clinical and public health communication about genomics.

摘要

基因组学使得分离多个基因成为可能,这些基因作为共同因素,会增加(但不是决定)包括α-1抗胰蛋白酶缺乏症(AATD)在内的许多成人发病的医疗状况的风险。那些被诊断患有成人发病医疗状况(如AATD)的人通常已婚,并作为夫妻共同做出检测和护理的决定。我们研究了基因本质主义和威胁信念,重点关注关于基因对疾病易感性和严重程度的贡献的信念,以及已婚夫妇(N = 59)对与基因和健康相关的控制的认知,其中一方配偶已接受与AATD相关的基因突变检测。配偶关于基因本质主义信念的组内相关性很强且具有统计学意义,但他们其他信念的相关性则不然。AATD参与者与其配偶在基因对疾病严重程度的影响方面的不一致,直接与对控制的不一致认知以及基因对疾病易感性的贡献相关。结果显示,这与AATD参与者对行为控制的认知呈反比关系,与他们对基因对疾病严重程度影响的信念呈正比关系。这表明存在一种不一致模式,即与配偶相比,AATD参与者对基因对健康影响的感知控制水平较低,而对基因对疾病严重程度的感知影响水平较高。由于公共卫生宣传工作落后于基因组学科学,关于已婚夫妇对基因对疾病影响的信念的一致性或不一致性的见解,为指导关于基因组学的临床和公共卫生宣传提供了途径。

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