Parental Attitudes toward Genetic Testing for Pediatric Deafness

Jeanne Weir Brunger; Gail S Murray; Maryann O’Riordan; Anne L Matthews; Richard J.H Smith; Nathaniel H Robin

doi:10.1086/316901

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Parental Attitudes toward Genetic Testing for Pediatric Deafness

Journal article

Open access

Peer reviewed

Parental Attitudes toward Genetic Testing for Pediatric Deafness

Jeanne Weir Brunger, Gail S Murray, Maryann O’Riordan, Anne L Matthews, Richard J.H Smith and Nathaniel H Robin

American journal of human genetics, Vol.67(6), pp.1621-1625

2000

DOI: 10.1086/316901

PMCID: PMC1287942

PMID: 11062052

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Abstract

Recent molecular genetic advances have resulted in genetic testing becoming an option for deaf individuals and their families. However, there is little information about the interest in such testing. To investigate this issue, parents with normal hearing who have one or more deaf children were surveyed 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 that 90%–95% of deaf individuals are born to persons with normal hearing. Of 328 surveys distributed, 96 were completed and returned. Of the respondents, 96% recorded a positive attitude toward genetic testing for deafness, including prenatal testing, although none would use this information to terminate an affected pregnancy. All respondents had a poor understanding of genetics, with 98% both incorrectly estimating the recurrence risk of deafness and 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 genetic testing did not receive genetic counseling or that the counseling was not effective. On the basis of these results, it was concluded that this population is interested in the use of genetic testing and that testing should not be done without first providing formal genetic counseling. Appropriate counseling can help parents to understand the risks, benefits, and limitations of genetic testing.

Details

Title: Subtitle: Parental Attitudes toward Genetic Testing for Pediatric Deafness
Creators: Jeanne Weir Brunger - Departments of Genetics, University School of Medicine, University Hospitals of Cleveland, Cleveland
Gail S Murray - Departments of Otolaryngology and Head and Neck Surgery, University School of Medicine, University Hospitals of Cleveland, Cleveland
Maryann O’Riordan - Departments of Pediatrics, University School of Medicine, University Hospitals of Cleveland, Cleveland
Anne L Matthews - Departments of Genetics, University School of Medicine, University Hospitals of Cleveland, Cleveland
Richard J.H Smith - Department of Otolaryngology and Head and Neck Surgery, University of Iowa, Iowa City
Nathaniel H Robin - Departments of Genetics, University School of Medicine, University Hospitals of Cleveland, Cleveland
Resource Type: Journal article
Publication Details: American journal of human genetics, Vol.67(6), pp.1621-1625
DOI: 10.1086/316901
PMID: 11062052
PMCID: PMC1287942
NLM abbreviation: Am J Hum Genet
ISSN: 0002-9297
eISSN: 1537-6605
Publisher: Elsevier Inc
Language: English
Date published: 2000
Academic Unit: Roy J. Carver Department of Biomedical Engineering; Molecular Physiology and Biophysics; Anatomy and Cell Biology; Stead Family Department of Pediatrics; Iowa Neuroscience Institute; Otolaryngology; Internal Medicine
Record Identifier: 9984007199202771

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