In focus. Has patient autonomy gone to far? Geneticists' views in 36 nations.
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.
Wertz
Dorothy C
DC
University of Massachusetts, Shriver Division, USA.
Fletcher
John C
JC
Nippert
Irmgard
I
Wolff
Gerhard
G
Ayme
Segolene
S
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