Assessing parental attitudes toward genetic testing for childhood hearing loss: Before and after genetic consultation

American Journal of Medical Genetics, Part A

Volumn 143, Issue 14, 2007, Pages 1546-1553

  Li, Yuelin ^a   Steinberg, Annie G ^b,c   Bain, Lisa ^c,d   Yaeger, Dinah ^b   Bieler, Ari ^b   Ewing, Rachel ^b   Kaimal, Girija ^b   Krantz, Ian ^b,c  

^a MEMORIAL SLOAN KETTERING CANCER CENTER   (United States)

^b CHILDREN S HOSPITAL OF PHILADELPHIA   (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

^d WISTAR INSTITUTE   (United States)

Author keywords

Childhood hearing loss; Genetic testing; Parental beliefs and attitude

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CONSULTATION; FEMALE; GENETIC ANALYSIS; GENETIC ATTITUDE ASSESSMENT TOOL; GENETIC COUNSELING; HEARING LOSS; HUMAN; INFANT; MALE; PARENTAL ATTITUDE; PERCEPTION DEAFNESS; PRIORITY JOURNAL; PSYCHOSOCIAL ENVIRONMENT; SCORING SYSTEM; VALIDATION PROCESS;

ADOLESCENT; ADULT; CHILD; GENETIC COUNSELING; GENETIC SCREENING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEARING LOSS, SENSORINEURAL; HUMANS; MIDDLE AGED; PARENTS; QUESTIONNAIRES; TIME FACTORS;

EID: 34447271512     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.31730     Document Type: Article

References (60)

1. American Academy of Pediatrics. 1999. Newborn and infant hearing loss: Detection and intervention. Pediatrics 103:527-530.
2. Arnos KS. 1990. Special considerations in genetic counseling with the deaf population. Birth Defects Orig Artic Ser 26:199-202.
3. Arnos KS, Israel J, Cunningham M. 1991. Genetic counseling of the deaf. Medical and cultural considerations. Ann NY Acad Sci 630:212-222.
4. Biesecker B. 2001. Prenatal diagnoses of sex chromosome conditions. BMJ 322:441-442.
5. Borry P, Fryns JP, Schotsmans P, Dierickx K. 2005. Attitudes towards carrier testing in minors: A systematic review. Genet Couns 16:341-352.
6. Brunger J, Murray G, O'Riordan M, Matthews A, Smith R, Robin N. 2000. Parental attitudes toward genetic testing for pediatric deafness. Am J Hum Genet 67:1621-1625.
7. Calderon R, Naidu S. 2000. Further support for the benefits of early identification and intervention for children with hearing loss. Volta Rev 100:53-84.
8. Campbell E, Ross LF. 2005. Parental attitudes and beliefs regarding the genetic testing of children. Community Genet 8:94-102.
9. Cohn ES, Kelley PM, Fowler TW, Gorga MP, Lefkowitz DM, Kuehn HJ, Schaefer GB, Gobar LS, Hahn FJ, Harris DJ, Kimberling WJ. 1999. Clinical studies of families with hearing loss attributable to mutations in the connexin 26 gene (GJB2/DFNB1). Pediatrics 103:546-550.
10. Cronbach LJ. 1951. Coefficient alpha and the internal structure of tests. Psychometrika 6:297-334.
11. Cullen RD, Buchman CA, Brown CJ, Copeland BJ, Zdanski C, Pillsbury HC III, Shores CG. 2004. Cochlear implantation for children with GJB2-related deafness. Laryngoscope 114:1415-1419.
12. Dagan O, Hochner H, Levi H, Raas-Rothschild A, Sagi M. 2002. Genetic testing for hearing loss: Different motivations for the same outcome. Am J Med Genet 113:137-143.
13. Dahl HH, Wake M, Sarant J, Poulakis Z, Siemering K, Blamey P. 2003. Language and speech perception outcomes in hearing-impaired children with and without connexin 26 mutations. Audiol Neurootol 8:263-268.
14. del Castillo FJ, Rodriguez-Ballesteros M, Alvarez A, Hutchin T, Leonardi E, de Oliveira CA, Azaiez H, Brownstein Z, Avenarius MR, Marlin S, Pandya A, Shahin H, Siemering KR, Weil D, Wuyts W, Aguirre LA, Martin Y, Moreno-Pelayo MA, Villamar M, Avraham KB, Dahl HH, Kanaan M, Nance WE, Petit C, Smith RJ, Van Camp G, Sartorato EL, Murgia A, Moreno F, del Castillo I. 2005. A novel deletion involving the connexin-30 gene, del(GJB6-d13s1854), found in trans with mutations in the GJB2 gene (connexin-26) in subjects with DFNB1 non-syndromic hearing impairment. J Med Genet 42:588-594.
15. Dennis C. 2004. Genetics: Deaf by design. Nature 431:894-896.
16. Denoyelle F, Marlin S, Weil D, Moatti L, Chauvin P, Garabedian EN, Petit C. 1999. Clinical features of the prevalent form of childhood deafness, DFNB1, due to a connexin-26 gene defect: Implications for genetic counselling. Lancet 353:1298-1303.
17. Devellis RF. 1991. Scale development. Theory and applications. Newbury Park, CA: Sage Publications, Inc.
18. Fabrigar LR, Wegener DT, MacCallum RC, Strahan EJ. 1999. Evaluating the use of exploratory factor analysis in psychological research. Psychol Methods 4:272-299.
19. Fukushima K, Sugata K, Kasai N, Fukuda S, Nagayasu R, Toida N, Kimura N, Takishita T, Gunduz M, Nishizaki K. 2002. Better speech performance in cochlear implant patients with GJB2-related deafness. Int J Pediatr Otorhinolaryngol 62:151-157.
20. Gasparini P, Estivill X, Fortina P. 1999. Vestibular and hearing loss in genetic and metabolic disorders. Curr Opin Neurol 12:35-39.
21. Green GE, Scott DA, McDonald JM, Teagle HF, Tomblin BJ, Spencer LJ, Woodworth GG, Knutson JF, Gantz BJ, Sheffield VC, Smith RJ. 2002. Performance of cochlear implant recipients with GJB2-related deafness. Am J Med Genet 109:167-170.
22. Green GE, Mueller RF, Cohn ES, Avraham KB, Kanaan M, Smith RJH. 2003. Audiologic manifestations and features of connexin 26 deafness. Audiolog Med 1:5-11.
23. Hayes D. 1999. State programs for universal newborn hearing screening. Ped Clin North Am 46:89-94.
24. Henson R, Roberts J. 2006. Use of exploratory factor analysis in published research: Common errors and some comment on improved practice. Educ Psychol Meas 66:393-416.
25. Holt K. 2006. What do we tell the children? Contrasting the disclosure choices of two HD families regarding risk status and predictive genetic testing. J Genet Couns 15:253-265.
26. Hone SW, Smith RJ. 2003. Genetic screening for hearing loss. Clin Otolaryngol 28:285-290.
27. Kelley PM, Harris DJ, Comer BC, Askew JW, Fowler T, Smith SD, Kimberling WJ. 1998. Novel mutations in the connexin 26 gene (GJB2) that cause autosomal recessive (DFNB1) hearing loss. Am J Hum Genet 62:792-799.
28. Kelsell DP, Dunlop J, Stevens HP, Lench NJ, Liang JN, Parry G, Mueller RF, Leigh IM. 1997. Connexin 26 mutations in hereditary non-syndromic sensorineural deafness. Nature 387:80-83.
29. Kudo T, Ikeda K, Oshima T, Kure S, Tammasaeng M, Prasansuk S, Matsubara Y. 2001. GJB2 (connexin 26) mutations and childhood deafness in Thailand. Otol Neurotol 22:858-861.
30. Kupka S, Braun S, Aberle S, Haack B, Ebauer M, Zeissler U, Zenner HP, Blin N, Pfister M. 2002. Frequencies of GJB2 mutations in German control individuals and patients showing sporadic non-syndromic hearing impairment. Hum Mutat 20:77-78.
31. Lorenzo-Seva U, Ferrando P. 2006. FACTOR: A computer program to fit the exploratory factor analysis model. Behav Res Methods 38:88-91.
32. Manasco PK. 2005. Ethical and legal aspects of applied genomic technologies: Practical solutions. Curr Mol Med 5:23-28.
33. Marazita ML, Ploughman LM, Rawlings B, Remington E, Arnos KS, Nance WE. 1993. Genetic epidemiological studies of early-onset deafness in the U.S. school-age population. Am J Med Genet 46:486-491.
34. Martinez W. 1998. Genetic testing of children and adolescents: Ethical, legal and psychosocial implications. Princet J Bioeth 1:65-75.
35. Martinez A, Linden J, Schimmenti LA, Palmer CG. 2003. Attitudes of the broader hearing, deaf, and hard-of-hearing community toward genetic testing for deafness. Genet Med 5:106-112.
36. Martinez A, Fox M, Crandall B, Shapiro N, Telatar M, Sininger Y, Grody W, Schimmenti L, Palmer C. 2004. Parental attitudes toward Connexin 26/30 genetic testing in their infants with hearing loss. Genet Med 6:258.
37. McDonald R. 1985. Factor analysis and related methods. Hillsdale, NJ: Lawrence Erlbaum Associates, Inc.
38. Middleton A, Hewison J, Mueller R. 1998. Attitudes of deaf adults toward genetic testing for hereditary deafness. Am J Hum Genet 63:1175-1180.
39. Moeller M. 2000. Early intervention and language development in children who are deaf and hard of hearing. Pediatrics 106:E43. Morton NE. 1991. Genetic epidemiology of hearing impairment. Ann NY Acad Sci 630:16-31.
40. Nunnally JC, Bernstein IH. 1994. Psychometric theory. New York: McGraw-Hill.
41. Parker M, Fortnum H, Young I, Davis A. 2000. Genetics and deafness: What do families want? J Med Genet 37:E26.
42. Pelias MK. 2006. Genetic testing of children for adult-onset diseases: Is testing in the child's best interests? Mt Sinai J Med 73:605-608.
43. Propst EJ, Stockley TL, Gordon KA, Harrison RV, Papsin BC. 2006. Ethnicity and mutations in GJB2 (connexin 26) and GJB6 (connexin 30) in a multi-cultural Canadian paediatric Cochlear Implant Program. Int J Pediatr Otorhinolaryngol 70:435-444.
44. Quinlivan JA, Suriadi C. 2006. Attitudes of new mothers towards genetics and newborn screening. J Psychosom Obstet Gynaecol 27:67-72.
45. Richards FH, Tassicker RJ, Kromberg JG, Singaram BM. 2002. Predictive genetic testing in children. Med J Aust 176:507.
46. Robertson S, Savulescu J. 2001. Is there a case in favour of predictive genetic testing in young children? Bioethics 15:26-49.
47. Ryan M, Miedzybrodzka Z, Fraser L, Hall M. 2003. Genetic information but not termination: Pregnant women's attitudes and willingness to pay for carrier screening for deafness genes. J Med Genet 40:e80.
48. Singer E, Corning A, Antonucci T. 1999. Attitudes toward genetic testing and fetal diagnosis, 1990-1996. J Health Soc Behav 40:429-445.
49. Snoeckx RL, Hassan DM, Kamal NM, Van Den Bogaert K, Van Camp G. 2005. Mutation analysis of the GJB2 (connexin 26) gene in Egypt. Hum Mutat 26:60-61.
50. SPSS Inc. 2003. SPSS for Windows. Version 12.0.0. Chicago: SPSS Inc.
51. Stern SJ, Arnos KS, Murrelle L, Welch KO, Nance WE, Pandya A. 2002. Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss. J Med Genet 39:449-453.
52. Stevens J. 1992. Applied multivariate statistics for the social sciences. Hillsdale, NJ: Lawrence Erlbaum Associates, Inc.
53. Stewart DW. 1981. The application and misapplication of factor analysis in marketing research. J Mark Res 18:51-62.
54. Tabachnick BG, Fidell LS. 1996. Using multivariate statistics. New York, NY: HarperCollins College Publishers.
55. Twomey JG. 2002. Genetic testing of children: Confluence or collision between parents and professionals? AACN Clin Issues 13:557-566.
56. Twomey JG. 2006. Issues in genetic testing of children. MCN Am J Matern Child Nurs 31:156-163.
57. Ware JE, Kosinski M, Gandek B. 2000. SF-36 health survey: Manual & interpretation guide. Lincoln, RI: Quality Metric, Inc.
58. Willems PJ. 2000. Genetic causes of hearing loss. N Engl J Med 342:1101-1109.
59. Yoshinaga-Itano C, Sedey AL, Coulter DK, Mehl AL. 1998. Language of early- and later-identified children with hearing loss. Pediatrics 102:1161-1171.
60. Zelante L, Gasparini P, Estivill X, Melchionda S, D'Agruma L, Govea N, Mila M, Monica MD, Lutfi J, Shohat M, Mansfield E, Delgrosso K, Rappaport E, Surrey S, Fortina P. 1997. Connexin26 mutations associated with the most common form of non-syndromic neurosensory autosomal recessive deafness (DFNB1) in Mediterraneans. Hum Mol Genet 6:1605-1609.