Towards a responsible insurance system in the era of personalized medicine. Exploring dilemmas of genomic health information in private life insurance.
Duration: November 2012 - present
Although on the one hand the increasing use of genetic testing for diagnostics and choice of therapy is welcomed, because it enables more purposeful and therefore more effective treatment of patients, on the other hand there is concern about the use of genetic information by insurance companies. Concern for genetic discrimination keeps coming up in societal debates on this topic. This is striking, because for years the Netherlands has known regulation that forbids the use of genetic information in the practice of insurance.
There is a void in the studies to the relation between fear of genetic discrimination and the current policy. To be able to ground future policy on the use of genetic information by insurance companies, an understanding of the specific backgrounds of the fear for genetic discrimination and the relation to the existing practice of insurance is needed.
With this project, Van Hoyweghen and Rebert map the value (life)insurance companies attach to genetic information and what dilemmas and concerns play a role in the use of this types of information in risk assessment. This information is subsequently used to put up structural relations between different stakeholders, including insurance companies, patient organizations, clinical geneticists and policy makers. Furthermore the possibilities for – more extensive – follow-up projects will be investigated.