title: Ethnicity and the ethics of data linkage.
abstract: Linking health data with census data on ethnicity has potential benefits for the health of ethnic minority groups. Ethical objections to linking these data however include concerns about informed consent and the possibility of the findings being misused against the interests of ethnic minority groups. While consent concerns may be allayed by procedures to safeguard anonymity and respect privacy, robust procedures to demonstrate public approval of data linkage also need to be devised. The possibility of findings being misused against the interests of ethnic minority groups may be diminished by informed and open public discussion in mature democracies, but remain a concern in the international context.
authors.affiliation: College of Medicine and Veterinary Medicine, University of Edinburgh, Biomedical Teaching Organisation, Medical School, Teviot Place, Edinburgh EH8 9AG, UK. k.boyd@ed.ac.uk
authors.forename: Kenneth M
authors.initials: KM
authors.lastname: Boyd
mesh_terms: D001294:Attitude to Health; D019352:Censuses; D003219:Confidentiality / Q000941:ethics*; D005006:Ethnicity; D006801:Humans; D007256:Information Systems / Q000941:ethics* / Q000592:standards; D007258:Informed Consent / Q000941:ethics; D007391:International Cooperation; D008498:Medical Record Linkage / Q000592:standards*; D008913:Minority Groups; D009936:Organizational Innovation; D010355:Patient Identification Systems / Q000941:ethics; D040442:Public Health Informatics / Q000941:ethics; D012606:Scotland; D018511:Systems Integration