Genetics and Insurance. Herschikking van solidariteit en verantwoordelijkheid
02 / 2006 - unknown
Nederlandse Organisatie voor Wetenschappelijk Onderzoek - NWO
Due to several developments in genetics research, our knowledge of human genetics has grown over the last decade. Clearly this has consequences in the field of insurance, but it is not yet clear what these consequences will be. So far the discussion has mainly been about the question whether genetic testing will be used for access to private insurance. Those who argue insurance companies should be allowed to use genetic information claim this information is needed to rate a person's risk, just like any other information. If not, insurers would be insuring 'burning houses'. Others disagree and fear that using genetic information might exclude those who are affected from insurance, work, education, etc., thus creating a 'genetic underclass'. Recent attention to public and private health insurance shows that the most important issue here is the definition of the insured good and the position of genetic testing in standard health care packages. The problems just mentioned are discussed in several European countries, and in each country these debates and the proposed solutions are different. In this project we aim to analyse these debates, to study the process of policy making from nearby. Considering the fact that genetic technologies, insurance practices and the interrelations between them are developing, this program studies 'genetics and insurance in the making'. The goal of this program is to provide theoretical and practical insights in the opportunities to relate genetics and insurance in a social responsible way and will contribute to the institutional position of 'users' of genetics and insurance in dealing with the dilemmas of genetics and insurance. Our project consists of three smaller projects, sharing some of the central questions and a common qualitative methodology (fieldwork, interviews, documents). The first project is a PhD project focusing on genetics and health insurance. The main question is which ideas and arguments are relevant in deciding which kinds of genetic technology should be included or not in the standard health care package. Who decides, which roles do different actors play and how are relationships organised? An important aspect of this project is the current wave of health care reforms in Europe. What do these reforms mean for genetics? This process of positioning genetics in health care systems under reform will be studied for the Netherlands, Germany and the UK. The second project is a post-doc project on genetics and life insurance, and as such it builds further upon a study of genetics and life insurance in Belgium (see Van Hoyweghen, 2004). After performing an analysis of practices in the Netherlands, Germany and the UK, the main focus will be on genetics and insurance on a European supra-national level. Within this context, special attention is paid to two actors: international reinsurance companies and user organisations. International reinsurance companies are a major actor in the life insurance industry. They play an important role in making statistics and they stimulate actuarial research into genetic risks. They also play an important role in international discussions and policy processes with respect to genetic risks. The focus on user groups is on a European level as well. An overview will be made of the number and types of European patient or consumer groups and their influence in European policy-making. The third project aims to analyse the findings of project 1 and 2 from a theoretical perspective. Central in this project is the analysis of developments with respect to genetics and public and private insurance in the different national contexts by focusing on institutional differences (neo-institutionalism).