title: In focus. Has patient autonomy gone to far? Geneticists' views in 36 nations.
abstract: We surveyed genetics professionals, patients, and the public about rights to information, to requested services, and to parenthood, posing difficult cases found in practice. In all, 2906 genetics professionals (63%), 499 primary care physicians (59%), 476 North American genetics patients (67%), 394 French patients (51%), 593 German patients (65%), and 988 members of the American public (99%) returned anonymous questionnaires. Results suggest a trend toward increased respect for patient autonomy since an earlier survey in 1985; in most nations more would perform prenatal diagnosis for a couple with 4 daughters who desire a son. A minority (35% in U.S., 14% elsewhere) would perform PND for a deaf couple who want a deaf child, but most (94% in U.S., 62% elsewhere) would do prenatal paternity testing in the absence of rape or incest. About half (51%) would support a woman with fragile X who wants children. The trend to respect patient autonomy was greatest in the U.S. and was least evident in China and India. In general, responses to these cases illustrate a shift away from population or eugenic concerns to a model of genetics focused on the individual.
authors.affiliation: University of Massachusetts, Shriver Division, USA.
authors.forename: Dorothy C
authors.initials: DC
authors.lastname: Wertz
authors.forename: John C
authors.initials: JC
authors.lastname: Fletcher
authors.forename: Irmgard
authors.initials: I
authors.lastname: Nippert
authors.forename: Gerhard
authors.initials: G
authors.lastname: Wolff
authors.forename: Segolene
authors.initials: S
authors.lastname: Ayme
mesh_terms: D000025:Abortion, Eugenic / Q000523:psychology; D022126:Access to Information; D001208:Asia; D001290:Attitude; D001291:Attitude of Health Personnel; D003625:Data Collection; D003638:Deafness; D006233:Persons with Disabilities; D005060:Europe; D005260:Female; D005817:Genetic Counseling / Q000523:psychology / Q000706:statistics & numerical data; D030342:Genetic Diseases, Inborn; D033142:Genetic Services; D005820:Genetic Testing; D006801:Humans; D038622:Internationality; D007843:Latin America; D008297:Male; D009656:North America; D026706:Paternalism; D010334:Paternity; D028701:Patient Rights; D010361:Patients / Q000523:psychology*; D026684:Personal Autonomy; D011296:Prenatal Diagnosis; D011639:Public Opinion; D012017:Referral and Consultation; D016079:Refusal to Treat; D012732:Sex Determination Analysis; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D000078329:Workforce