title: A preliminary comparison of the hopes of researchers, clinicians, and families for the future ethical use of genetic findings on schizophrenia.
abstract: A written questionnaire about genetic testing was distributed to all registrants at The 2004 World Congress of Psychiatric Genetics, mailed to clinical psychiatrists obtained from a directory of clinicians practicing in New York City, and mailed to members of families who have multiple affected family members with schizophrenia. A total of 274 individuals responded (162 researchers, 64 clinicians, and 48 family members). This survey shows that the majority of family members who completed the questionnaire (83.3%) would want to be tested if a genetic test were to become available. Over half of the family members (56.2%) would want prenatal testing. Similarly, over half of the clinicians (56.3%) would recommend it, despite only 25% of the researchers reporting that it would be a future useful tool. All of the clinicians surveyed thought adoption agencies should inform families about a family history of schizophrenia, while only half of the researchers thought this should be done (51.9%). These differences in opinions between consumers, their clinicians, and researchers could be based on a lack of understanding of the amount of risk conferred to family members by reported gene variants. Providing public discussions for placing these risks in perspective should be the responsibility of researchers. Open public discussion of the ethical and social uses of the information gained from psychiatric genetic research and its limitations is encouraged.
authors.affiliation: Department of Psychiatry, New York University, New York, NY 10016, USA. DeLisi76@AOL.com
authors.forename: Lynn E
authors.initials: LE
authors.lastname: DeLisi
authors.forename: Hilary
authors.initials: H
authors.lastname: Bertisch
mesh_terms: D000328:Adult; D005190:Family / Q000523:psychology; D005260:Female; D005544:Forecasting; D030661:Genetic Privacy / Q000941:ethics* / Q000523:psychology; D036281:Genetic Research / Q000941:ethics; D005820:Genetic Testing / Q000941:ethics* / Q000523:psychology / Q000639:trends; D006801:Humans; D008297:Male; D008875:Middle Aged; D010820:Physicians; D012108:Research Personnel; D012559:Schizophrenia / Q000175:diagnosis* / Q000235:genetics; D011795:Surveys and Questionnaires