title: When legal worlds collide: from research to treatment in hereditary cancer prevention.
abstract: This paper critically examines the legal and ethical dilemma in the institutionalization of a prevention and treatment technology on hereditary non-polyposis colorectal cancer (HNPCC) in Finland. Current medical practice and legislation support the notion of non-directiveness in genetic counselling, patient autonomy and personal privacy. Clinical doctors in Finland, however, proposed that a research register of HNPCC carriers should be nationalized through a legal mandate, which would require all carriers to be identified on the basis of the mutation, but also provide a national healthcare and counselling infrastructure for preventive treatment. This paper argues that although such a register would undermine personal autonomy and privacy, there should be a strong incentive by the state to intervene from a preventive health perspective. Such a position would be contrary to current medical ethics and legal practice, but it would ensure that all patients receive equal access to information, screening and treatment, as well as help to reduce mortality rates.
authors.affiliation: Research Group for Comparative Sociology, Department of Sociology, University of Helsinki, Helsinki, Finland. aaro.tupasela@helsinki.fi
authors.forename: A
authors.initials: A
authors.lastname: Tupasela
mesh_terms: D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000517:prevention & control*; D004992:Ethics, Medical; D032984:Ethics, Research; D005387:Finland; D030661:Genetic Privacy / Q000941:ethics* / Q000331:legislation & jurisprudence; D005820:Genetic Testing / Q000941:ethics / Q000331:legislation & jurisprudence; D006801:Humans; D012042:Registries