Use of Genetic Information by Life, Long-term Care, and Disability Insurers: Exploring International Lessons, the Domestic Legal Landscape, and Options for U.S. Policy

 描述(由申请人提供)：这个项目使用多种方法和跨学科的方法来探索美国联邦和州政府寻求解决人寿、长期护理和残疾保险公司如何使用基因信息的政策选择。分析将侧重于精算理由的法律标准，即要求保险公司必须证明风险因素与增加的成本之间的统计相关性，以便在承保决定中使用该因素，例如拒绝保单或增加保费。这一领域的政策可以在两个方面显著影响个人的健康。首先，获得生活、长期护理或残疾保险的障碍可能威胁到个人和家庭的经济稳定，导致无法支付医疗保健或其他必需品。其次，对基因歧视的恐惧可能会阻止个人接受预测性基因测试，这种测试可以提供临床相关信息，帮助预防或减轻未来的疾病。该项目有两个主要目标：1)系统地研究美国和国际上生命、长期护理和残疾保险公司使用基因信息的法律和政策格局；2)为寻求解决这一领域基因歧视问题的美国联邦和州政府提供各种政策选择。为了实现这些目标，我提出了三个具体目标。AIM 1采用案例研究方法，探索美国以外的四个国家已利用的政策机制，以解决保险公司使用基因信息的问题，特别关注这些政策如何使用和定义精算理由的标准。对于每个案例研究，我将对相关政策文件进行搜索和分析，并对关键利益相关者进行有针对性的深入访谈，如学术/政策专家、政府官员、倡导团体代表和保险代表。AIM 2通过两个子目标询问了美国现有的州精算正当法是如何在遗传信息的背景下被解释和执行的。Aim 2a利用调查方法对美国州保险专员如何解释和执行州精算法进行了实证研究。目标2b使用法规、法规和适用的州法律的法律分析来评估各州如何合法地定义和部署精算证明标准。目标2a的调查答复将为关于如何执行或解释现有立法的法律分析提供信息。AIM 3负责对美国政府在州和联邦一级可用的立法和监管备选方案进行政策分析。通过政策分析和批评、目标1和目标2得出的结论以及政策专家的反馈，目标3将提供政策选择，以解决生命、长期护理和残疾保险公司使用基因信息的问题，并解决达到这一领域精算标准所需的门槛证据水平。这个项目和最终的政策建议直接支持了NHGRI关于生命、长期护理和残疾保险公司使用基因信息的确定的ELSI研究优先事项。

 DESCRIPTION (provided by applicant): This project employs multiple methods and a transdisciplinary approach to explore policy options for US federal and state governments seeking to address how life, long-term care, and disability insurers use genetic information. The analysis will focus on legal standards of actuarial justification, that is, the requirement that insurers must show a statistical correlation between a risk factor and increased cost in order to use that factor in an underwriting decision such as a policy denial or an increased premium. Policies in this area can significantly affect the heath of individuals in two ways. First, barrier of access to life, long-term care, or disability insurance can threaten economic stability of individuals and families, leading to inability to pay for healthcare or other necessities. Second, fear of genetic discrimination may prevent individuals from undergoing predictive genetic testing, testing that could provide clinically relevant information to help prevent or mitigate futre disease. This project has two primary goals: 1) to systematically examine the legal and policy landscape of life, long-term care, and disability insurer use of genetic information in the US and internationally; and 2) to offer a variety of policy options for US federal and state governments that seek to address genetic discrimination in this area. To meet these goals, I propose three specific aims. Aim 1 employs a case study methodology to explore the policy mechanisms that four countries outside the US have utilized to address insurer use of genetic information, with particular focus on how these policies use and define standards of actuarial justification. For each case study I will conduct a search and analysis of relevant policy documents as well as conduct and analyze targeted, in-depth interviews with key stakeholders such as academic/policy experts, government officials, advocacy group representatives, and insurance representatives. Aim 2 interrogates how existing US state actuarial justification laws have been interpreted and enforced in the context of genetic information through two sub-aims. Aim 2a utilizes survey methodology to empirically examine how US state insurance commissioners are interpreting and enforcing state actuarial laws. Aim 2b employs legal analysis of statutes, regulations, and applicable state law to evaluate how states have legally defined and deployed actuarial justification standards. The survey responses of Aim 2a will inform the legal analysis regarding how existing legislation may be enforced or interpreted. Aim 3 undertakes policy analysis of the legislative and regulatory options available to US governments at the state and federal level. Through policy analysis and critique, conclusions drawn from Aims 1 and 2, and feedback from a policy-experts, Aim 3 will provide policy options to address life, long-term care, and disability insurer use of genetic information and to address the threshold evidence levels needed to meet actuarial standards in this area. This project and the final policy recommendations directly support an identified ELSI research priority of the NHGRI regarding life, long-term care, and disability insurer use of genetic information.