Genomics and Insurance in the United Kingdom: Increasing Complexity and Emerging Challenges

This article identifies issues relating to the use of genetics and genomics in insurance that may challenge existing regulatory models in the UK and elsewhere. We discuss three core issues: (1) As genomic testing advances, and results are increasingly relevant to guide healthcare across an individual's lifetime, the distinction between diagnostic and predictive testing that the current UK insurance code relies on becomes more blurred and this has consequences what constitutes a genetic “result” (2) The emerging category of pharmacogenomic tests which are predictive only the in the context of a specific prescribing moment (3) The increasing availability and affordability of polygenic scores that are neither clearly diagnostic nor highly predictive, but which nonetheless might have incremental value for insurance underwriting beyond conventional factors. We also outline the broad scope of possible regulatory responses to these developments. At present in the UK, consumers are not obliged to declare results of predictive genetic tests except in very specific scenarios, meaning that pricing is not actuarially fair (premiums paid in such cases are likely to be lower than the expected value of the compensation received). We suggest a deliberative approach is required to establish where these deviations from actuarially fair pricing should be upheld, and whether there might be situations in which they should be withdrawn.