Mind the risk: Ethical, psychological and social implications of provision of risk information from genetic and related technologies - A joint European research program

There is a massive production of genetic risk information by academic- and industry-associated scientists. However, health care systems as well as legislators and society at large seem largely unprepared for how to manage complex risk information in a way that takes values, beliefs and psychological needs of individuals and families into consideration. The genetic information technologies transcend national borders and give rise both to hopes of individualized health advice and selection of optimal treatment and prevention but also fears about stigmatisation and providing risk information that is not actionable, may give rise to unrealistic expectations, may induce confusion and anxiety, may harm privacy, and may lead to a neglect of social risk factors related to disease. Through a multi-disciplinary research program representing strong academic centres in Europe we will provide a rich philosophical and conceptual framework that together with historical and socio-cultural analyses of concerns about risk information, empirical investigations of risk perceptions and preferences and ethical analyses may guide regulation and management of genetic and related risk information in various settings. The concepts developed provide a theoretical background to the outcome projects, a serious game (SimGene) and the ethical analysis. A series of workshops and an end-user conference will contribute to methodological development, cross-disciplinary collaboration and dissemination.