GENETIC KNOWLEDGE AND ATTITUDES IN ALZHEIMER'S DISEASE

阿尔茨海默病的遗传知识和态度

• 批准号: 6181644
• 负责人: Deborah L. BLACKER
• 金额: $ 33.07万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-09-30 至 2002-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6181644
• 关键词: Alzheimer's disease; attitude; behavioral /social science research tag; clinical research; disease /disorder proneness /risk; ethics; family genetics; genetic disorder diagnosis; health care personnel education; health surveys; human subject; information dissemination; interview; legal /correctional; linkage mapping; primary care physician; questionnaires; social psychology; videotape /videodisc

This is a resubmission of Genetic Knowledge and Attitudes in Alzheimer's Disease (1 R01 HG0183), which addresses the ethical, legal, and social implications Alzheimer's disease (AD) genetics from the critical perspective of a group at high risk for the disease: currently unaffected relatives in families with AD. The applicants--at Mass General Hospital/Harvard Medical School and the University of Alabama--have been working together since 1990 as part of the NIMH Genetics Initiative to identify families with Alzheimer's disease for a genetic linkage study. Nearly 350 such families, predominantly affected sibling pairs and over 300 of their unaffected siblings, have been collected. Regular follow- up of unaffected subjects is in process in order to monitor them for disease onset and assess the role of risk factors for AD, and there are approximately 200 additional unaffected siblings in study families. In the present proposal, the two centers will study knowledge, attitudes, and behavior related to genetic studies and genetic testing in the unaffected individuals in these AD families and their primary care physicians, and will develop and pilot educational materials designed to address their needs for genetic information. Information about the ethical, legal, and social implications is just as critical as that about inheritance patterns and risk probabilities. We will employ a broad approach including qualitative as well as quantitative methods in order to capture the complexity, uncertainty, and subjectivity in this new realm. Given the growing prevalence, devastating symptoms, and prodigious social cost of AD, the recent flurry of developments in AD genetics has received extensive attention both from the popular press and from advertisers touting putative genetic tests. Those whose family history puts them at increased risk for AD are especially vulnerable to misinformation. Their primary care physicians are also ill-prepared to address these issues. The genetic educational materials for laypeople and physicians to be developed and tested in the present proposal strive to meet their current needs for accurate information, to prepare them for future challenges, and to supply models for genetic education in other complex diseases.

这是阿尔茨海默氏病的遗传知识和态度 (1 R01 HG0183) 的重新提交，它从阿尔茨海默氏病 (AD) 遗传学的伦理、法律和社会影响的角度，从该疾病高危人群的关键角度解决了该问题：目前不受影响患有 AD 的家庭中的亲戚。 麻省总医院/哈佛医学院和阿拉巴马大学的申请者自 1990 年以来一直在合作，作为 NIMH 遗传学计划的一部分，旨在识别患有阿尔茨海默病的家庭进行遗传连锁研究。 已收集了近 350 个这样的家庭，其中主要是受影响的兄弟姐妹，以及 300 多个未受影响的兄弟姐妹。 正在对未受影响的受试者进行定期随访，以监测他们的疾病发作情况并评估 AD 危险因素的作用，研究家庭中还有大约 200 名未受影响的兄弟姐妹。在目前的提案中，两个中心将研究这些AD家庭中未受影响的个体及其初级保健医生与基因研究和基因检测相关的知识、态度和行为，并将开发和试点旨在满足他们的需求的教育材料。遗传信息。 有关道德、法律和社会影响的信息与有关继承模式和风险概率的信息同样重要。 我们将采用包括定性和定量方法在内的广泛方法来捕捉这个新领域的复杂性、不确定性和主观性。鉴于阿尔茨海默病的日益流行、破坏性症状和巨大的社会成本，最近阿尔茨海默病遗传学的一系列发展受到了大众媒体和宣传假定基因测试的广告商的广泛关注。 那些家族史使他们患 AD 的风险增加的人尤其容易受到错误信息的影响。 他们的初级保健医生也没有做好解决这些问题的准备。 本提案中将开发和测试的面向外行和医生的遗传教育材料力求满足他们当前对准确信息的需求，为他们应对未来的挑战做好准备，并为其他复杂疾病的遗传教育提供模型。