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

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.


This 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.