RESTRICTING INSURERS USE OF GENETIC INFORMATION

描述(改编自《调查者摘要》)：大约12个 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，无症状基因 易患疾病并不构成预先存在的疾病。 该项目将评估这些法律在六个州的影响，使用 定性、比较、案例研究方法。三个州都有法律 限制保险公司使用基因信息将与三个相匹配 缺乏这些法律的可比州。这项多案例研究将 由定性和定量数据源和分析数据源组成 方法：(1)对关键线人进行结构化、深入、开放式的访谈 专家访谈；(2)保险的参与性观察性研究 代理；(3)销售资料和新闻文章的内容分析；(4) 档案文件和二次数据的统计分析。初级阶段 采访对象将是健康保险公司、保险监管机构、保险公司 代理人、患者权益倡导团体和临床医生。 以下是主要的研究问题：这些州和联邦政府 法律增加了对遗传弱势用户的覆盖范围？在那里吗 这些法律有没有造成严重逆向选择的迹象？是否符合条件 患者使用精选的基因测试或更多地参与基因研究 愿意在有这些法律的州吗？这些法律是如何解释的？ 由代理/经纪人实施？是否出现了规避的技术 这些法律？这项调查的结果将在 在各种演示文稿和最后报告中发表同行评议的出版物。 这些将通知立法者、购买者和公共政策社区 这些法律是否以及如何达到其预期目的或导致 任何负面后果，以及如何加强或加强这些法律 改进了。

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.