History and Past Activities
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History and Past Activities |
Aaro Tupasela
University of Helsinki
Biomedical Research destabilizing estabilished frameworks: Hereditary disease, prevention and the chalenge of regulation
New genetics have increasingly begun to challenge and change existing conceptions of disease, illness and the ways in which they can be diagnosed and treated. Biomedical research is providing new preventive technologies that are more accurate and efficient than ever before. Such changes have prompted an increase in the legal and ethical frameworks into which new genetics are constituted. At the same time, however, new biomedical knowledge is changing these conceptions and perspectives, often in a way that poses ethical and legal dilemmas, both nationally and internationally.
This paper examines the legal and ethical dilemma concerning a Finnish research register for Hereditary Non-Polyposis Colorectal Cancer (HNPCC) and the challenges that clinical doctors have had in transferring the register to the healthcare sector. Recently the researchers suggested that the registry be given a legal mandate and a national healthcare program to go with it. The case illustrates the way in which biomedical knowledge on hereditary cancer is challenging existing conceptions of disease and illness, broadening the scope from the individual as a patient to the whole family as an object of preventive technology. At the same time, this shift in focus is challenging existing legislation on privacy and traditional conceptions associated with research and treatment.
Sociology of Science and Technology NETwork - last update: April 2006