title: Genetic information and genetic discrimination how medical records vitiate legal protection. A comparative analysis of international legislation and policies.
abstract: This study compares currently enacted and pending legislation and policies concerning genetic information and genetic discrimination in Europe and the USA. The emergence of a multi-disciplinary scientific field comprising genetically-related areas and the discovery of new genetic factors have improved our ability to predict genetic risks associated with illness. Early detection and preventive healthcare thus hold promise for improving public health, but much remains unknown about the actual risks deriving from genetic testing. Positive (not-normal) test results may give little certainty of the actual severity of a disease. Genetic information could thus be used for social stigmatization and genetic discrimination. Western laws have been enacted in a context of unknown potential risks and benefits, and an increased number of regulatory initiatives is to be expected. Yet, there is currently no comprehensive US or European legal approach concerning genetic information and genetic discrimination and, despite legislation thus far enacted, the protection of individuals remains uncertain, and this could have a negative impact on attitudes to genetic testing, with important consequences for public health strategies to prevent disease.
authors.affiliation: Department of Community Health Sciences, University of Lund, Sweden. saul.embla@telia.com
authors.forename: E
authors.initials: E
authors.lastname: Rosén
mesh_terms: D003219:Confidentiality / Q000331:legislation & jurisprudence*; D004651:Employment / Q000331:legislation & jurisprudence; D004992:Ethics, Medical; D005060:Europe; D005820:Genetic Testing / Q000331:legislation & jurisprudence*; D006291:Health Policy / Q000331:legislation & jurisprudence*; D006801:Humans; D007348:Insurance, Health / Q000331:legislation & jurisprudence; D008499:Medical Records / Q000331:legislation & jurisprudence*; D010344:Patient Advocacy / Q000331:legislation & jurisprudence*; D011287:Prejudice; D011634:Public Health / Q000331:legislation & jurisprudence; D014481:United States