Moulding knowledge - Multiple (mis)uses of genetic risk information
(University of Helsinki)
Paper short abstract:
Paper long abstract:
During the last ten years Finnish healthcare system - like in many other welfare states - has been under growing pressure to increase efficiency and cut costs. One of the leading ideas to tackle this problem has been to concentrate on preventive care and new technological solutions to help citizens take charge of their personal health. This has become evident especially in the strategic discussions related to genomics and utilization of genetic risk information. Some pilot projects and R&D efforts related to genomics and use of genetic risk information have been launched, and among the biomedical experts there is much discussion about how, for what purposes and in what format genetic risk information should be mediated to patients, doctors or healthy citizens. One of the key elements seems to be how to make genomic or genetic risk information understandable, utilizable and helpful for the possible users of the information. This paper is based on an ongoing project were the mediation and moulding of genetic risk information is examined from multiple standpoints: 1) Citizen and patient perspectives on receiving genetic risk information and using related health applications. 2) Doctors' and health care workers' conceptions about using risk information as part of health care. 3) Policy-making and expert discussions on the future of healthcare, genome strategy and biobank practices. The paper presents the conceptual framework used in the project as well as some preliminary empirical results.
Technologies of care and participation: Shifting the distribution of expertise and responsibilities