RESTRICTING INSURERS USE OF GENETIC INFORMATION

描述（改编自研究者摘要）：大约12个 美国各州已颁布法律，限制健康保险公司使用基因测试 信息，一项新的联邦法律宣布，无症状遗传 易患病的体质并不构成预先存在的状况。 该项目将评估这些法律在六个州的影响， 定性、比较、案例研究方法。 三个国家的法律 限制保险公司使用基因信息将与三个相匹配 这些国家没有这样的法律。 这一多个案例研究将 包括定性和定量数据源的混合， 方法：（1）对关键知情人进行结构化、深度、开放式访谈 （2）保险业的参与性观察研究 代理商;（3）销售文献和新闻文章的内容分析;以及（4） 档案文件和二手数据的统计分析。 主 采访对象将是医疗保险公司，保险监管机构，保险 代理人、患者倡导团体和临床医生。 以下是主要的研究问题：这些州和联邦 法律增加了对基因缺陷用户的覆盖？ 有 这些法律导致了严重的逆向选择吗 做合格的 患者更多地使用选定的基因检测或参与基因研究 在有这些法律的国家，？ 如何解释这些法律， 由代理商/经纪人实施？ 是否出现了规避 这些法律？ 调查结果将于2009年公布。 同行评审的出版物、各种演示文稿和最终报告。 这些将告知立法者，购买者和公共政策界 这些法律是否以及如何实现其预期目的或造成 任何负面影响，以及如何加强这些法律或 提高

DESCRIPTION (Adapted from the Investigator's Abstract): About a dozen states have enacted laws restricting health insurers' use of genetic test information, and a new federal law declares that asymptomatic genetic predisposition to illness does not constitute a pre-existing condition. This project will evaluate the effects of these laws in six states using a qualitative, comparative, case study methodology. Three states with laws restricting insurers' use of genetic information will be matched with three comparable states that lack these laws. This multiple case study will consist of a mix of qualitative and quantitative data sources and analytical methods: (1) structured, in-depth, open-ended interviews of key informants by expert interviewers; (2) participant observational studies of insurance agents; (3) content analysis of sales literature and news articles; and (4) statistical analyses of archival documents and secondary data. The primary interview subjects will be health insurers, insurance regulators, insurance agents, patient advocacy groups, and clinicians. The following are the major study questions: Do these state and federal laws increase coverage for genetically disadvantaged subscribers? Are there any signs of serious adverse selection caused by these laws? Do eligible patients use selected genetic tests or participate in genetic research more readily in states with these laws? How are these laws interpreted and implemented by agents/brokers? Have techniques arisen for circumventing these laws? The results of this investigation will be disseminated in peer-reviewed publications, in various presentations, and in a final report. These will inform lawmakers, purchasers, and the public policy community whether and how these laws have achieved their intended purposes or caused any negative consequences, and how these laws might be strengthened or improved.