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 2 a utilizes survey methodology to empirically examine how US state insurance commissioners are interpreting and enforcing state actuarial laws.
Aim 2 b 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.
As clinicians and researchers explore how genomic sequencing can be utilized to prevent or mitigate genetic conditions and diseases, many individuals who are expected to benefit from these findings remain fearful of how insurers not currently included under federal genetic discrimination legislation can use their sequencing and test results, with potentially harmful outcomes. Through exploration of both the US and international context, this project seeks to better understand the ways that life, long-term care, and disability insurers can legally use genetic information, with particular focus on legal standards of actuarial justification. By providing policy recommendations to address possible discrimination, this project addresses an important NHGRI legal, regulatory, and public policy research priority to investigate the use of genetic information by life, disability, and long-term care insurance companies, determination of actuarial risk, and the impact of state laws.
| Waltz, Margaret; Cadigan, R Jean; Prince, Anya E R et al. (2018) Age and perceived risks and benefits of preventive genomic screening. Genet Med 20:1038-1044 |
| Spector-Bagdady, Kayte; Prince, Anya E R; Yu, Joon-Ho et al. (2018) Analysis of state laws on informed consent for clinical genetic testing in the era of genomic sequencing. Am J Med Genet C Semin Med Genet 178:81-88 |
| Prince, Anya E R; Cadigan, R Jean; Whipple, Warren et al. (2017) Membership recruitment and training in health care ethics committees: Results from a national pilot survey. AJOB Empir Bioeth 8:161-169 |
