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

PI: Anya Prince


About the project:

            This project seeks to better understand the ways that life, long-term care, and disability insurers can legally use genetic information. It 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. The project has three stages. In the first, I employed case study methodology to explore how some countries have responded to insurer use of genetic information. In the second, I turn my focus to US policy through legal analysis and surveys. In the final stage, I will undertake policy analysis to provide recommendations and options for US federal and state governments.



The research is funded by the National Human Genome Research Institute (NHGRI) under a Pathway to Independence (K99/R00) grant (R00HG008819). Stage 1 of the research was completed at UNC Chapel Hill. Stages 2 & 3 continue at the University of Iowa College of Law.


Stage 1: International Case Studies

Countries: Sweden, Canada, United Kingdom, Australia

Interviews: For each case study I conducted semi-structured interviews with stakeholders, including policy experts, government officials, advocacy group members, and insurance representatives. The interviews covered several categories of questions including the countries’ policies, the effects of the policies, actuarial standards, and limited demographic information. The interviews lasted between 10-90 minutes and were predominately conducted in person.

Manuscripts: Publications related to this stage are in progress


Stage 2: US Law

Insurance Commissioner Survey

Experiential Policy Projects


Stage 3: Recommendations

More information to come