REVEAL II

这个子项目是利用由NIH/NCRR资助的中心拨款提供的资源的许多研究子项目之一。子项目和调查员(PI)可能从另一个NIH来源获得了主要资金，因此可能会出现在其他CRISE条目中。列出的机构是针对中心的，而不一定是针对调查员的机构。人们正在迅速确定基因和其他生物标记，它们可以为个人最终发展复杂的迟发性疾病提供症状前的估计或风险。最近发现的许多遗传标记不是决定性基因，而是与其他尚未确定的基因以及年龄、性别、种族、家族史和环境暴露等因素相互作用的易感基因。公众对获取风险信息有着广泛的兴趣，并达成了广泛的共识，即很快就会开发出减缓或防止退行性疾病发作的治疗方法。由于对基因敏感性测试的市场和使用限制很少，它们的使用可能很快就会增加。然而，很少或根本没有可用的数据来了解谁(例如年龄、性别、种族)将在获得遗传易感性风险信息后寻求这些信息；以及他们为什么会这样做(例如为了获得治疗、缓解焦虑、为经济做准备)。更重要的是，几乎没有关于提供易感风险信息的潜在益处或负面后果的信息，这些信息可以指导合理的临床决策或公共政策。阿尔茨海默病(AD)是一种影响认知和行为的常见进行性疾病，在该疾病中发现了一种常见的易感基因多态性(APOE)。虽然一些共识声明建议不要在临床上使用APOE基因分型，但这些声明中的每一个都要求进行研究，以评估易感性基因分型的影响，并探索关于风险问题的沟通过程。1999年资助的这项研究是为了招募AD患者的成年子女，目标如下：-确定谁将选择获得APOE基因分型-为APOE基因分型的披露制定教育和咨询方案-研究披露信息的影响

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Genes and other biological markers are rapidly being identified that can provide presymptomatic estimates or risk to individuals for the eventual development of complex late-onset diseases. Many of the recently discovered genetic markers are not deterministic genes, but rather susceptibility genes that interact with other, as yet unidentified genes, and with factors such as age, gender, race, family history and environmental exposures. There is widespread public interest in obtaining risk information, and a broad consensus that treatments will soon be developed to slow or prevent the onset of degenerative disease. With few restrictions on the marketing and utilization of genetic susceptibility tests, their use may soon increase. Nevertheless, there are little or no data available to understand who( e.g., age, gender, race) will seek genetic susceptibility risk information once it is available; and why they would do so (e.g. to obtain treatment , to alleviate anxiety, to prepare financially). Even more importantly, there is little information on the potential benefits or negative consequences of providing susceptibility risk information that could guide rational clinical decisions or public policy. Alzheimer's disease (AD) is a common, progressive disease affecting cognition and behavior, in which a common susceptibility polymorphism (APOE) has been identified. While several consensus statements have advised against the clinical use of APOE genotying, each of these called for research to evaluate the impact of susceptibility genotyping and to explore the process of communicating about risk issues. The REVEAL study was funded in 1999 to enroll adult children of patients with AD with the following objectives: - to determine who would choose to obtain APOE genotyping - to devise an education and counseling protocol for the disclosures of APOE genotying - to study the impact of disclosing the information