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Keywords:

  • genetics;
  • survey;
  • expectations;
  • family member

Abstract

Genetic counseling is a health service, which has been indicated for individuals with psychiatric conditions in their families. However, little is known about the awareness and/or experiences of genetic counseling of this group. This study was designed to assess the awareness and perceptions of genetic counseling among individuals affected by schizophrenia and their relatives. Data was collected via two online surveys. Study participants either had schizophrenia or had a relative with schizophrenia and were recruited via links from schizophrenia web sites. This study was granted IRB approval. Sixty-eight individuals with schizophrenia and 145 relatives completed the surveys. Ninety-four percent of all respondents had not been offered genetic counseling. Zero percent of affected individuals and only 5% of relatives had received genetic counseling. Forty-four percent of affected individuals and 41% of relatives indicated that their family planning decisions were influenced by the presence of schizophrenia in their family. Seventy four percent of relatives and 72% of people with schizophrenia thought genetic counseling would be useful to them. Respondents indicated that they felt genetic counseling would be useful for them and that they would like to see a genetic counselor. However, few individuals are being offered genetic counseling services. The awareness of genetic counseling needs to be raised among physicians and families affected by schizophrenia. © 2007 Wiley-Liss, Inc.