title: Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: a survey from Finland.
abstract: In the present study we explore the attitudes of the Finnish population toward genetic testing by conducting a questionnaire study of a stratified sample of the population as well as of family members of patients with a severe hereditary disease, aspartylglucosaminuria (AGU). The questionnaire evaluated attitudes toward gene tests in general and also respondents' preparedness to undergo gene tests for predictive testing, carrier detection, prenatal diagnosis, and selective abortion, in theoretical situations. The results of the study indicate that both the Finnish population in general and family members of AGU patients have a favorable attitude toward genetic testing. However, a commonly expressed reason against testing was that test results might lead to discrimination in employment or insurance policies. Based on the responses, we predict that future genetic testing programs will most probably be met with a high acceptance rate by the Finnish population.
authors.affiliation: Department of Medical Genetics, University of Turku, Finland.
authors.forename: M
authors.initials: M
authors.lastname: Hietala
authors.forename: A
authors.initials: A
authors.lastname: Hakonen
authors.forename: A R
authors.initials: AR
authors.lastname: Aro
authors.forename: P
authors.initials: P
authors.lastname: Niemelä
authors.forename: L
authors.initials: L
authors.lastname: Peltonen
authors.forename: P
authors.initials: P
authors.lastname: Aula
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D004651:Employment; D005260:Female; D005387:Finland; D030342:Genetic Diseases, Inborn; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D007341:Insurance; D008607:Intellectual Disability / Q000209:etiology; D007398:Interpersonal Relations; D016464:Lysosomal Storage Diseases / Q000150:complications / Q000175:diagnosis* / Q000235:genetics; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D011153:Population; D037841:Pregnant People; D011287:Prejudice; D012494:Sampling Studies; D012732:Sex Determination Analysis; D011795:Surveys and Questionnaires