Parental attitudes toward genetic testing for pediatric deafness

Recent molecular genetic advances have resulted in genetic testing becoming an option for deaf individuals and their families. However, there is littl e information about the interest in such testing. To investigate this issue , parents with normal hearing who have one or more deaf children were surve yed about their attitudes toward diagnostic, carrier, and prenatal genetic testing for deafness. This population was chosen because it represents the majority of individuals who are encountered in clinical practice, given tha t 90%-95% of deaf individuals are born to persons with normal hearing. Of 3 28 surveys distributed, 96 were completed and returned. Of the respondents, 96% recorded a positive attitude toward genetic testing for deafness, incl uding prenatal testing, although none would use this information to termina te an affected pregnancy. All respondents had a poor understanding of genet ics, with 98% both incorrectly estimating the recurrence risk of deafness a nd misunderstanding the concept of inheritance. Notably these findings were similar in the group who had had genetic testing for their children and in the group who had not, suggesting either that the parents who received gen etic testing did not receive genetic counseling or that the counseling was not effective. On the basis of these results, it was concluded that this po pulation is interested in the use of genetic testing and that testing shoul d not be done without first providing formal genetic counseling. Appropriat e counseling can help parents to understand the risks, benefits, and limita tions of genetic testing.