메뉴 건너뛰기




Volumn 15, Issue 4, 2013, Pages 274-281

Autism genetic testing: A qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders

Author keywords

attitude; autism spectrum disorders; awareness; genetic testing; parents

Indexed keywords

ARTICLE; ASIAN; AUTISM; AWARENESS; CHILDHOOD DISEASE; CLINICAL ARTICLE; EARLY INTERVENTION; ETHNIC DIFFERENCE; FAMILY CONFLICT; FAMILY PLANNING; FEMALE; GENETIC SCREENING; GENETIC SERVICE; HEALTH CARE ACCESS; HEALTH EDUCATION; HEALTH INSURANCE; HUMAN; MALE; MOTIVATION; PARENTAL ATTITUDE; PERSONAL EXPERIENCE; PROFESSIONAL COMPETENCE; QUALITATIVE RESEARCH; RACE DIFFERENCE; SEMI STRUCTURED INTERVIEW; SOCIAL STATUS;

EID: 84875950569     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2012.145     Document Type: Article
Times cited : (67)

References (40)
  • 1
    • 42349095075 scopus 로고    scopus 로고
    • Advances in autism genetics: On the threshold of a new neurobiology
    • Abrahams BS, Geschwind DH. Advances in autism genetics: on the threshold of a new neurobiology. Nat Rev Genet 2008;9:341-355.
    • (2008) Nat Rev Genet , vol.9 , pp. 341-355
    • Abrahams, B.S.1    Geschwind, D.H.2
  • 2
    • 79960592596 scopus 로고    scopus 로고
    • Genetics in autism diagnosis: Adding molecular subtypes to neurobehavioral diagnoses
    • Johnson HM, Gaitanis J, Morrow EM. Genetics in autism diagnosis: adding molecular subtypes to neurobehavioral diagnoses. Med Health R I 2011;94:124-126.
    • (2011) Med Health R i , vol.94 , pp. 124-126
    • Johnson, H.M.1    Gaitanis, J.2    Morrow, E.M.3
  • 3
    • 79952197224 scopus 로고    scopus 로고
    • Genetic testing for autism: Recent advances and clinical implications
    • Miller DT. Genetic testing for autism: recent advances and clinical implications. Expert Rev Mol Diagn 2010;10:837-840.
    • (2010) Expert Rev Mol Diagn , vol.10 , pp. 837-840
    • Miller, D.T.1
  • 4
    • 36048962688 scopus 로고    scopus 로고
    • Management of children with autism spectrum disorders
    • Myers SM, Johnson CP; American Academy of Pediatrics Council on Children With Disabilities. Management of children with autism spectrum disorders. Pediatrics 2007;120:1162-1182.
    • (2007) Pediatrics , vol.120 , pp. 1162-1182
    • Myers, S.M.1    Johnson, C.P.2
  • 5
    • 42149168524 scopus 로고    scopus 로고
    • Clinical genetics evaluation in identifying the etiology of autism spectrum disorders
    • Schaefer GB, Mendelsohn NJ; Professional Practice and Guidelines Committee. Clinical genetics evaluation in identifying the etiology of autism spectrum disorders. Genet Med 2008;10:301-305.
    • (2008) Genet Med , vol.10 , pp. 301-305
    • Schaefer, G.B.1    Mendelsohn, N.J.2
  • 6
    • 77952032690 scopus 로고    scopus 로고
    • Consensus statement: Chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies
    • Miller DT, Adam MP, Aradhya S, et al. Consensus statement: chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies. Am J Hum Genet 2010;86:749-764.
    • (2010) Am J Hum Genet , vol.86 , pp. 749-764
    • Miller, D.T.1    Adam, M.P.2    Aradhya, S.3
  • 7
    • 34247481814 scopus 로고    scopus 로고
    • Strong association of de novo copy number mutations with autism
    • Sebat J, Lakshmi B, Malhotra D, et al. Strong association of de novo copy number mutations with autism. Science 2007;316:445-449.
    • (2007) Science , vol.316 , pp. 445-449
    • Sebat, J.1    Lakshmi, B.2    Malhotra, D.3
  • 8
    • 77950564908 scopus 로고    scopus 로고
    • Clinical genetic testing for patients with autism spectrum disorders
    • Shen Y, Dies KA, Holm IA, et al.; Clinical genetic testing for patients with autism spectrum disorders. Pediatrics 2010;125:e727-e735.
    • (2010) Pediatrics , vol.125
    • Shen, Y.1    Dies, K.A.2    Holm, I.A.3
  • 9
    • 80052535784 scopus 로고    scopus 로고
    • Diagnostic yield of genetic testing in children diagnosed with autism spectrum disorders at a regional referral center
    • Roesser J. Diagnostic yield of genetic testing in children diagnosed with autism spectrum disorders at a regional referral center. Clin Pediatr (Phila) 2011;50:834-843.
    • (2011) Clin Pediatr (Phila) , vol.50 , pp. 834-843
    • Roesser, J.1
  • 10
    • 24144501508 scopus 로고    scopus 로고
    • Cytogenetic abnormalities and fragile-X syndrome in Autism Spectrum Disorder
    • Reddy KS. Cytogenetic abnormalities and fragile-X syndrome in Autism Spectrum Disorder. BMC Med Genet 2005;6:3.
    • (2005) BMC Med Genet , vol.6 , pp. 3
    • Reddy, K.S.1
  • 11
    • 84859990409 scopus 로고    scopus 로고
    • Working up autism: The practical role of medical genetics
    • Gurrieri F. Working up autism: the practical role of medical genetics. Am J Med Genet C Semin Med Genet 2012;160C:104-110.
    • (2012) Am J Med Genet C Semin Med Genet , vol.160 C , pp. 104-110
    • Gurrieri, F.1
  • 12
    • 79957589237 scopus 로고    scopus 로고
    • Exome sequencing in sporadic autism spectrum disorders identifies severe de novo mutations
    • O'Roak BJ, Deriziotis P, Lee C, et al. Exome sequencing in sporadic autism spectrum disorders identifies severe de novo mutations. Nat Genet 2011;43:585-589.
    • (2011) Nat Genet , vol.43 , pp. 585-589
    • O'Roak, B.J.1    Deriziotis, P.2    Lee, C.3
  • 13
    • 79959262465 scopus 로고    scopus 로고
    • Transcriptomic analysis of autistic brain reveals convergent molecular pathology
    • Voineagu I, Wang X, Johnston P, et al. Transcriptomic analysis of autistic brain reveals convergent molecular pathology. Nature 2011;474:380-384.
    • (2011) Nature , vol.474 , pp. 380-384
    • Voineagu, I.1    Wang, X.2    Johnston, P.3
  • 14
  • 15
    • 0033837083 scopus 로고    scopus 로고
    • Practice parameter: Screening and diagnosis of autism: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society
    • Filipek PA, Accardo PJ, Ashwal S, et al. Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology 2000;55:468-479.
    • (2000) Neurology , vol.55 , pp. 468-479
    • Filipek, P.A.1    Accardo, P.J.2    Ashwal, S.3
  • 16
    • 84875930928 scopus 로고    scopus 로고
    • Genetic testing for autism predispostion: Ethical, legal, and soical challenges
    • Marchant GE, Robert JS. Genetic testing for autism predispostion: ethical, legal, and soical challenges. Houst J Health Law Policy 2009:203-235.
    • (2009) Houst J Health Law Policy , pp. 203-235
    • Marchant, G.E.1    Robert, J.S.2
  • 17
    • 77958106087 scopus 로고    scopus 로고
    • Whole-genome association studies for multigenic diseases: Ethical dilemmas arising from commercialization-The case of genetic testing for autism
    • Jordan BR, Tsai DF. Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization-the case of genetic testing for autism. J Med Ethics 2010;36:440-444.
    • (2010) J Med Ethics , vol.36 , pp. 440-444
    • Jordan, B.R.1    Tsai, D.F.2
  • 18
    • 0142031147 scopus 로고    scopus 로고
    • Screening for Fragile X Syndrome: Parent attitudes and perspectives
    • Skinner D, Sparkman KL, Bailey DB Jr. Screening for Fragile X Syndrome: parent attitudes and perspectives. Genet Med 2003;5:378-384.
    • (2003) Genet Med , vol.5 , pp. 378-384
    • Skinner, D.1    Sparkman, K.L.2    Bailey, Jr.D.B.3
  • 20
    • 20444436768 scopus 로고    scopus 로고
    • Parental attitudes and beliefs regarding the genetic testing of children
    • Campbell E, Ross LF. Parental attitudes and beliefs regarding the genetic testing of children. Community Genet 2005;8:94-102.
    • (2005) Community Genet , vol.8 , pp. 94-102
    • Campbell, E.1    Ross, L.F.2
  • 22
    • 70349679125 scopus 로고    scopus 로고
    • Parents' perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors
    • Selkirk CG, McCarthy Veach P, Lian F, Schimmenti L, LeRoy BS. Parents' perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. J Genet Couns 2009;18:507-519.
    • (2009) J Genet Couns , vol.18 , pp. 507-519
    • Selkirk, C.G.1    McCarthy Veach, P.2    Lian, F.3    Schimmenti, L.4    Leroy, B.S.5
  • 24
    • 33646459788 scopus 로고    scopus 로고
    • Parental perspectives on the causes of an autism spectrum disorder in their children
    • Mercer L, Creighton S, Holden JJ, Lewis ME. Parental perspectives on the causes of an autism spectrum disorder in their children. J Genet Couns 2006;15:41-50.
    • (2006) J Genet Couns , vol.15 , pp. 41-50
    • Mercer, L.1    Creighton, S.2    Holden, J.J.3    Lewis, M.E.4
  • 25
    • 57149086686 scopus 로고    scopus 로고
    • The role of qualitative research in medicial genetics: Listening to the voices of our patients
    • Barbara AB. The role of qualitative research in medicial genetics: listening to the voices of our patients. Am J Med Genet. Part A 2008;146A:3132-3135
    • (2008) Am J Med Genet. Part A , vol.146 A , pp. 3132-3135
    • Barbara, A.B.1
  • 26
    • 85205866552 scopus 로고    scopus 로고
    • 〈http://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/PLAW-110publ233. pdf〉
    • Accessed 3 October 2012
    • Genetic Information Nondiscrimination Act (GINA) of 2008. 〈http://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/PLAW-110publ233. pdf〉. Accessed 3 October 2012.
    • Genetic Information Nondiscrimination Act (GINA) of 2008.
  • 27
    • 84870451528 scopus 로고    scopus 로고
    • Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act
    • Allain DC, Friedman S, Senter L. Consumer awareness and attitudes about insurance discrimination post enactment of the Genetic Information Nondiscrimination Act. Fam Cancer 2012.
    • (2012) Fam Cancer
    • Allain, D.C.1    Friedman, S.2    Senter, L.3
  • 28
    • 3242876939 scopus 로고    scopus 로고
    • Exploring the public understanding of basic genetic concepts
    • Lanie AD, Jayaratne TE, Sheldon JP, et al. Exploring the public understanding of basic genetic concepts. J Genet Couns 2004;13:305-320.
    • (2004) J Genet Couns , vol.13 , pp. 305-320
    • Lanie, A.D.1    Jayaratne, T.E.2    Sheldon, J.P.3
  • 29
    • 85205837926 scopus 로고    scopus 로고
    • Centers for Disease Control and Prevention Accessed September 8, 2012
    • Centers for Disease Control and Prevention. Autism A.L.A.R.M. Guidelines. 2010 〈http://www.medicalhomeinfo.org/downloads/pdfs/AutismAlarm. pdf〉. Accessed September 8, 2012.
    • (2010) Autism A.L.A.R.M. Guidelines.
  • 30
    • 28644446593 scopus 로고    scopus 로고
    • Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: A global problem
    • Baars MJ, Henneman L, Ten Kate LP. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genet Med 2005;7:605-610.
    • (2005) Genet Med , vol.7 , pp. 605-610
    • Baars, M.J.1    Henneman, L.2    Ten Kate, L.P.3
  • 31
    • 0042322740 scopus 로고    scopus 로고
    • US physicians' attitudes toward genetic testing for cancer susceptibility
    • Freedman AN, Wideroff L, Olson L, et al. US physicians' attitudes toward genetic testing for cancer susceptibility. Am J Med Genet Part A 2003;120A:63-71.
    • (2003) Am J Med Genet Part A , vol.120 A , pp. 63-71
    • Freedman, A.N.1    Wideroff, L.2    Olson, L.3
  • 32
    • 84862243027 scopus 로고    scopus 로고
    • Chinese americans' views of prenatal genetic testing in the genomic era: A qualitative study
    • Chen L, Zhao M, Zhou Q, Xu L. Chinese Americans' views of prenatal genetic testing in the genomic era: a qualitative study. Clin Genet 2012;82:22-27.
    • (2012) Clin Genet , vol.82 , pp. 22-27
    • Chen, L.1    Zhao, M.2    Zhou, Q.3    Xu, L.4
  • 33
    • 61949322929 scopus 로고    scopus 로고
    • Pediatricians' knowledge of and attitudes toward fragile X syndrome screening
    • Kemper AR, Bailey DB Jr. Pediatricians' knowledge of and attitudes toward fragile X syndrome screening. Acad Pediatr 2009;9:114-117.
    • (2009) Acad Pediatr , vol.9 , pp. 114-117
    • Kemper, A.R.1    Bailey, Jr.D.B.2
  • 34
    • 63149109553 scopus 로고    scopus 로고
    • Medical homes for children with autism: A physician survey
    • Golnik A, Ireland M, Borowsky IW. Medical homes for children with autism: a physician survey. Pediatrics 2009;123:966-971.
    • (2009) Pediatrics , vol.123 , pp. 966-971
    • Golnik, A.1    Ireland, M.2    Borowsky, I.W.3
  • 35
    • 33747627615 scopus 로고    scopus 로고
    • Parental beliefs about autism: Implications for the treating physician
    • Harrington JW, Patrick PA, Edwards KS, Brand DA. Parental beliefs about autism: implications for the treating physician. Autism 2006;10:452-462.
    • (2006) Autism , vol.10 , pp. 452-462
    • Harrington, J.W.1    Patrick, P.A.2    Edwards, K.S.3    Brand, D.A.4
  • 36
    • 34547673174 scopus 로고    scopus 로고
    • Factors affecting decisions to accept or decline cystic fibrosis carrier testing/screening: A theory-guided systematic review
    • Chen LS, Goodson P. Factors affecting decisions to accept or decline cystic fibrosis carrier testing/screening: a theory-guided systematic review. Genet Med 2007;9:442-450.
    • (2007) Genet Med , vol.9 , pp. 442-450
    • Chen, L.S.1    Goodson, P.2
  • 37
    • 0034095911 scopus 로고    scopus 로고
    • Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2
    • Phillips KA, Warner E, Meschino WS, et al. Perceptions of Ashkenazi Jewish breast cancer patients on genetic testing for mutations in BRCA1 and BRCA2. Clin Genet 2000;57:376-383.
    • (2000) Clin Genet , vol.57 , pp. 376-383
    • Phillips, K.A.1    Warner, E.2    Meschino, W.S.3
  • 38
    • 0036591549 scopus 로고    scopus 로고
    • Genetic testing for women previously diagnosed with breast/ovarian cancer: Examining the impact of BRCA1 and BRCA2 mutation searching
    • Hallowell N, Foster C, Ardern-Jones A, Eeles R, Murday V, Watson M. Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching. Genet Test 2002;6:79-87.
    • (2002) Genet Test , vol.6 , pp. 79-87
    • Hallowell, N.1    Foster, C.2    Ardern-Jones, A.3    Eeles, R.4    Murday, V.5    Watson, M.6
  • 39
    • 23944502273 scopus 로고    scopus 로고
    • Attitudes about genetics in underserved, culturally diverse populations
    • Catz DS, Green NS, Tobin JN, et al. Attitudes about genetics in underserved, culturally diverse populations. Community Genet 2005;8:161-172.
    • (2005) Community Genet , vol.8 , pp. 161-172
    • Catz, D.S.1    Green, N.S.2    Tobin, J.N.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.