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Assessing parental attitudes toward genetic testing for childhood hearing loss: Before and after genetic consultation
Author(s) -
Li Yuelin,
Steinberg Annie G.,
Bain Lisa,
Yaeger Dinah,
Bieler Ari,
Ewing Rachel,
Kaimal Girija,
Krantz Ian
Publication year - 2007
Publication title -
american journal of medical genetics part a
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.064
H-Index - 112
eISSN - 1552-4833
pISSN - 1552-4825
DOI - 10.1002/ajmg.a.31730
Subject(s) - hearing loss , genetic counseling , deferral , genetic testing , psychosocial , medicine , clinical psychology , psychology , audiology , developmental psychology , test (biology) , psychiatry , genetics , business , accounting , biology , paleontology
We report on the development of a Genetic Attitude Assessment Tool (GAAT) to measure parental attitudes in contemplating genetic testing for childhood hearing loss, and to examine the differences in assessments made before and after genetic counseling. The GAAT tool was administered to a convenient sample of 119 parents of children with bilateral sensorineural hearing loss. The respondents completed the survey either before (n = 77) or after (n = 42) genetic counseling. Exploratory Factor Analysis was applied to identify and quantify the underlying psychosocial structure. Our results showed the validated 54‐item GAAT instrument contains six subscales: (1) “test intention,” (2) “beliefs in non‐genetic causes of hearing loss,” (3) “deferral of decision to undergo genetic testing,” (4) “appropriate use of genetic testing results,” (5) “beliefs in the benefits,” and (6) “concerns about stigma.” The respondents who answered the survey after genetic counseling had higher “test intention” ( P = 0.017) and endorsed to a greater extent “beliefs in the benefits” ( P < 0.001). They believed to a lesser extent that childhood hearing loss was due to “non‐genetic causes” ( P < 0.001) and were less inclined to prefer “decision deferral” ( P = 0.031). Respondents who themselves had a hearing loss expressed a significantly weaker belief in “non‐genetic causes” of hearing loss ( P < 0.0001). In conclusion the validated GAAT instrument is responsive to changes in parental attitudes after genetic counseling. The GAAT may be used to monitor parental attitudes serially, to further understand how parental attitudes change from pre genetic counseling, post genetic counseling, to post test result disclosure. © 2007 Wiley‐Liss, Inc.