Department of Psychological and Brain Sciences, University of Massachusetts, Amherst, USA.
National Cancer Institute, National Institutes of Health, USA.
Soc Sci Med. 2020 Oct;262:113147. doi: 10.1016/j.socscimed.2020.113147. Epub 2020 Jun 23.
Individuals who choose to obtain genetic information may learn that their genetic profile confers health risks to themselves or offspring. Individuals may react more negatively to this information when personal attitudes, perceived norms, and/or the decision to receive results conflict with one another.
We predicted that holding more negative attitudes (personal evaluations) or injunctive norms (perceptions of others' approval) toward obtaining genetic test results would prospectively predict greater conflict about the decision to undergo sequencing and less disclosure of sequencing results to family members. We also expected attitudes and norms to interact, such that attitudes would be negatively associated with decisional conflict and positively associated with disclosure when injunctive norms were positive, but weakly associated with outcomes when injunctive norms were negative.
Participants (N=312) were enrolled in a genomic sequencing trial focused on identifying carrier genetic variants, reflecting a variant that might affect their biological children's or grandchildren's health. Participants reported attitudes and injunctive norms, underwent sequencing, and later received results indicating carrier status for at least one variant. Decisional conflict was assessed at immediate post-test, and 1- and 6-month follow-ups. Disclosure of results to children and siblings were assessed at 1 and 6 months.
In structural equation models with covariates, attitudes were negatively associated with post-test and 1-month decisional conflict. Injunctive norms were negatively associated with decisional conflict at 1 and 6 months and positively associated with disclosure to children and siblings at 1 month. The significant attitudes by injunctive norms interaction predicting post-test decisional conflict supported lower decisional conflict when attitudes, norms, and the decision to receive results were all aligned. Exploratory analyses supported indirect effects of attitudes and norms on 6-month sibling disclosure via 1- month decisional conflict.
Results support roles of psychosocial factors in decisional conflict and disclosure after receiving sequencing results.
选择获取遗传信息的个体可能会了解到，他们的遗传特征会对自己或后代的健康带来风险。当个人态度、感知规范和/或接收结果的决策相互冲突时，个体可能会对这些信息做出更负面的反应。
我们预测，对获取遗传测试结果持有更负面的态度（个人评估）或禁止性规范（对他人认可的看法），将前瞻性地预测对进行测序决策的冲突更大，并且向家庭成员披露测序结果的意愿更低。我们还期望态度和规范会相互作用，即当禁止性规范为正时，态度与决策冲突呈负相关，与披露呈正相关，而当禁止性规范为负时，态度与结果的相关性较弱。
参与者（N=312）参加了一项基因组测序试验，该试验旨在确定携带遗传变异体，即可能影响其生物子女或孙子女健康的变异体。参与者报告了态度和禁止性规范，进行了测序，随后收到了至少一个变体的携带者状态结果。在即时后测试、1 个月和 6 个月的随访中评估决策冲突。在 1 个月和 6 个月时评估向子女和兄弟姐妹披露结果的情况。
在包含协变量的结构方程模型中，态度与后测试和 1 个月时的决策冲突呈负相关。禁止性规范与 1 个月和 6 个月时的决策冲突呈负相关，与 1 个月时向子女和兄弟姐妹披露呈正相关。态度与禁止性规范的显著交互作用预测后测试决策冲突，支持当态度、规范和接收结果的决策一致时，决策冲突更低。探索性分析支持态度和规范通过 1 个月时的决策冲突对 6 个月时的兄弟姐妹披露的间接影响。
结果支持心理社会因素在接受测序结果后的决策冲突和披露中的作用。
