Stigma, culture & genetics of schizophrenia

耻辱、文化

• 批准号: 6430113
• 负责人: BARBARA BOWLES BIESECKER
• 金额: --
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/6430113
• 关键词: behavioral genetics; belief; clinical research; culture; decision making; family genetics; gene expression; genetic susceptibility; human genetic material tag; human subject; interview; linkage mapping; psychosocial separation; schizophrenia; siblings

This ongoing study is exploratory in nature and seeks to understand the perceived stigma that may be associated with the genetics of schizophrenia. Sixteen parents of individuals with schizophrenia and 10 siblings have been interviewed to determine: 1) the individuals' context of illness; 2) their interest in and understanding of genetic research related to schizophrenia; 3) their decision-making in choosing to participate in a linkage study; 4) their perception of stigma associated with schizophrenia; 5) if/how the identification of a gene associated with schizophrenia may alter the stigma associated with this illness; 6) how schizophrenia is similar to or different from other genetic diseases; 7) if/how their identity with a particular culture shapes their beliefs about stigma and genetic research. The interviews were audiotaped and transcribed and have been coded for themes. Preliminary analysis suggests that most participants view genetic predisposition to schizophrenia as less stigmatizing. They perceive the confirmation of a biological cause as freeing from outdated notions of poor parenting or dysfunctional families. Further analysis of the data is underway.

这项正在进行的研究是探索性的，旨在了解可能与精神分裂症遗传学相关的感知耻辱。对16名精神分裂症患者的父母和10名兄弟姐妹进行了访谈，以确定：1）个人的疾病背景; 2）他们对精神分裂症相关遗传研究的兴趣和理解; 3）他们选择参加连锁研究的决策; 4）他们对精神分裂症相关耻辱的看法; 5）与精神分裂症相关的基因的鉴定是否/如何改变与这种疾病相关的耻辱; 6）精神分裂症与其他遗传疾病如何相似或不同; 7）他们对特定文化的认同是否/如何塑造他们对耻辱和遗传研究的信念。访谈录了音，转录了文字，并按主题进行了编码。初步分析表明，大多数参与者认为精神分裂症的遗传易感性不那么污名化。他们认为，确认生物原因是从过时的观念中解放出来的，这些观念认为父母养育不当或家庭功能失调。对数据的进一步分析正在进行中。