November 16, 2005

Schizophrenia Genetic Testing Survey

A new research study has been published on different perceptions of the value of genetic testing for schizophrenia.

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. (i.e. the increased risk that families and clinicians think that the gene variants linked to schizophrenia is higher than the research suggests, because of the very large number of environmental factors involved in schizophrenia)

Given the different level of hopes and expectations regarding genetic testing for schizophrenia, the journal article suggests that "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."

Source: A preliminary comparison of the hopes of researchers, clinicians, and families for the future ethical use of genetic findings on schizophrenia, Delisi LE, Bertisch H
Am J Med Genet B Neuropsychiatr Genet. 2005 Nov 14;


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