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

生命、长期护理和残疾保险公司对遗传信息的使用：探索国际经验教训、国内法律格局和美国政策选择

• 批准号: 9146372
• 负责人: Anya E.R. Prince
• 金额: $ 9.11万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-18 至 2017-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9146372
• 关键词: Address; Advocacy; Affect; Area; Australia; Case Study; Charge; Correlation Studies; Country; Critiques; Disability Insurance; Discrimination; Disease; Economics; Educational process of instructing; Employment; Ensure; Family; Federal Government; Feedback; Fright; Genetic; Genetic screening method; Genomics; Geographic state; Goals; Government; Government Officials; Health; Health Insurance; Healthcare; Hereditary Disease; Hereditary Nonpolyposis Colorectal Neoplasms; Huntington Disease; Individual; Insurance; Insurance Carriers; International; Intervention; Interview; Laws; Learning; Legal; Level of Evidence; Life; Light; Long-Term Care; Long-Term Care Insurance; Manuscripts; Medical; Medical Genetics; Mentors; Methodology; Methods; Modeling; National Human Genome Research Institute; Outcome; Phase; Policies; Policy Analysis; Policy Research; Positioning Attribute; Predictive Value; Preventive measure; Public Policy; Recommendation; Regulation; Research; Research Personnel; Research Priority; Risk; Risk Factors; Secure; State Government; Statutes and Laws; Students; Survey Methodology; Surveys; Techniques; Test Result; Testing; Training; Variant; clinically relevant; cost; disability; genetic discrimination; genetic information; genomic data; meetings; prevent; response

 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.

 描述（由申请人提供）：该项目采用多种方法和跨学科的方法来探索美国联邦和州政府的政策选择，寻求解决生命，长期护理和残疾保险公司如何使用遗传信息。分析的重点是精算理由的法律的标准，即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，以便在承保决策中使用该因素，例如拒绝保单或增加保费。这一领域的政策可以通过两种方式对个人的健康产生重大影响。首先，获得生命、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检测，这些检测可以提供临床相关信息，以帮助预防或减轻未来疾病。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遗传信息的法律的和政策环境; 2）为美国联邦和州政府寻求解决这一领域的遗传歧视问题提供各种政策选择。为了实现这些目标，我提出了三个具体目标。目标1采用案例研究方法，探讨美国以外的四个国家已经利用，以解决保险公司使用的遗传信息的政策机制，特别注重这些政策如何使用和定义标准的精算理由。对于每个案例研究，我将对相关政策文件进行搜索和分析，并对学术/政策专家、政府官员、倡导团体代表和保险代表等关键利益相关者进行有针对性的深入访谈。目的2询问如何现有的美国国家精算辩护法律已被解释和执行的遗传信息的背景下，通过两个子目标。目的2a利用调查方法，以实证研究美国国家保险专员是如何解释和执行国家精算法。目标2b采用法律的分析的法规，规章制度和适用的国家法律，以评估国家如何在法律上定义和部署精算的理由标准。对目标2a的调查答复将为关于如何执行或解释现行立法的法律的分析提供信息。目标3对美国政府在州和联邦一级可用的立法和监管选择进行政策分析。通过政策分析和评论，从目标1和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遗传信息，并解决满足该领域精算标准所需的阈值证据水平。该项目和最终的政策建议直接支持NHGRI确定的ELSI研究优先事项，涉及生命，长期护理和残疾保险公司使用遗传信息。

项目成果

Insurance Risk Classification in an Era of Genomics: Is a Rational Discrimination Policy Rational?

基因组时代的保险风险分类：合理的歧视政策合理吗？

• 发表时间: 2017
• 期刊: Nebraska law review
• 作者: Prince,AnyaER

Analysis of state laws on informed consent for clinical genetic testing in the era of genomic sequencing.

基因组测序时代的临床基因检测知情同意的州法律分析。

• DOI: 10.1002/ajmg.c.31608
• 发表时间: 2018-03
• 期刊: American journal of medical genetics. Part C, Seminars in medical genetics
• 作者: Spector-Bagdady K;Prince AER;Yu JH;Appelbaum PS
• 通讯作者: Appelbaum PS

Age and perceived risks and benefits of preventive genomic screening.

• DOI: 10.1038/gim.2017.206
• 发表时间: 2018-09
• 期刊: Genetics in medicine : official journal of the American College of Medical Genetics
• 作者: Waltz M;Cadigan RJ;Prince AER;Skinner D;Henderson GE
• 通讯作者: Henderson GE

Membership recruitment and training in health care ethics committees: Results from a national pilot survey.

• DOI: 10.1080/23294515.2017.1338315
• 发表时间: 2017-07-01
• 期刊: AJOB empirical bioethics
• 作者: Prince, Anya E R;Cadigan, R Jean;Davis, Arlene M
• 通讯作者: Davis, Arlene M

Comparative perspectives: regulating insurer use of genetic information.

比较视角：规范保险公司对遗传信息的使用。

• DOI: 10.1038/s41431-018-0293-1
• 发表时间: 2019
• 期刊: European journal of human genetics : EJHG
• 作者: Prince,AnyaER