GENES, DISEASE AND STIGMA--A STUDY OF PUBLIC ATTITUDES

基因、疾病和耻辱——公众态度研究

• 批准号: 2906499
• 负责人: JO C PHELAN
• 金额: $ 23.4万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-09-20 至 2002-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2906499
• 关键词: African American; Chinese American; Puerto Rican; attitude; behavioral /social science research tag; belief; caucasian American; culture; disease /disorder etiology; family genetics; genetic disorder; genetic susceptibility; health care policy; human subject; interview; mental disorders; population survey; prejudice; psychobiology; psychosocial separation; public opinion; racial /ethnic difference; social behavior; social psychology

DESCRIPTION (Adapted from the Investigator's Abstract): Stigma and discrimination are recognized as potentially important consequences of advances in genetic information. Important work in this area has focused on discrimination against people with genetic predispositions to disease by insurers, employers, and educational institutions. The investigators propose an expansion of this concern to a more broadly conceived study of stigma by focusing on public attitudes, behavioral intentions and policy orientations. Specifically, they are concerned with the impact of perceived genetic etiology on orientations towards individuals and families affected by illnesses. The investigators focus on mental illnesses, because they are clearly stigmatizing, there is strong and growing evidence for genetic involvement in several mental disorders, and there are strong and conflicting predictions regarding the likely impact of biological understandings of mental illness on stigma. Despite their importance, no systematic study of these questions exists. The investigators propose a multi-method research plan that includes in-depth interviews with 100 adults from 5 ethnic groups (African-, Chinese-, European-, Mexican-, and Puerto-Rican-Americans), and a random-digit-dial telephone survey of the adult U.S. population, with oversamples of each of the above minority ethnic groups, as well as of persons whose families are affected by a serious mental illness, to address the following aims: 1) to assess the impact of an attributed genetic etiology on orientations toward individuals and families affected by a serious mental illness; (2) to determine the characteristics of respondents (e.g., education, age or ethnicity) that are associated with more stigmatizing attitudes and orientations; (3) to examine types of information that may ameliorate any stigmatizing effects of perceived genetic etiology; and (4) to assess experiences of stigma on the part of families affected by mental illness and their perceptions of the way knowledge of genetic etiology may impact the stigma they face. The achievement of these aims will provide critical information on a nationwide basis concerning the nature and extent of public stigmatization of people who have or are at risk for developing genetic diseases. By identifying the attitudes and beliefs that drive stigmatization and discrimination, the investigators will be better poised to address the social consequences of the expansion of knowledge about the human genome.

描述（改编自研究者摘要）：耻辱和 歧视被认为是进步的潜在重要后果， 基因信息。这一领域的重要工作集中于 歧视有遗传疾病倾向的人， 保险公司、雇主和教育机构。调查人员提出了一个 将这一关注扩大到对污名的更广泛的研究， 关注公众态度、行为意图和政策取向。 具体来说，他们关注的是感知遗传病因学的影响 对受疾病影响的个人和家庭的指导。 调查人员专注于精神疾病，因为他们显然是 污名化，有强有力的和越来越多的证据表明，基因参与 几种精神疾病，有强烈的和相互矛盾的预测， 关于对精神疾病的生物学理解可能对 耻辱尽管这些问题很重要， 存在. 研究人员提出了一个多方法的研究计划，其中包括深入 采访了来自5个民族（非洲人，中国人，欧洲人， 墨西哥裔和波多黎各裔美国人），以及随机数字拨号电话调查 成年美国人口，上述每个少数民族的过度抽样 受严重种族歧视影响的人以及家庭受到严重种族歧视影响的人 精神疾病，以实现以下目标： 1)评估归因于遗传病因学对取向的影响 对受严重精神疾病影响的个人和家庭;（2） 确定应答者的特征（例如，教育、年龄或 种族）与更多的污名化态度有关， （3）检查可能改善任何 认知遗传病因的污名化效应;（4）评估 受精神疾病影响的家庭遭受耻辱的经历， 他们对遗传病因学知识可能影响 他们面对的耻辱。 这些目标的实现将提供关于全国范围内 关于公开诋毁那些 患有或有可能患上遗传性疾病。通过识别 导致污名化和歧视的态度和信仰， 调查人员将更好地解决社会后果， 人类基因组知识的扩展。