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Volumn 119 C, Issue 1, 2003, Pages 60-69

Perceptions of reproductive risk and carrier testing among adolescent sisters of males with chronic granulomatous disease

Author keywords

Adolescents; Carrier testing; Chronic granulomatous disease; Family dynamics; Genetic counseling; Minors; Siblings

Indexed keywords

ADOLESCENT; ADULT; AGE; ATTITUDE; AUTOSOMAL RECESSIVE INHERITANCE; CHRONIC GRANULOMATOUS DISEASE; CLINICAL RESEARCH; CONFERENCE PAPER; DECISION MAKING; FAMILY; FEMALE; GENETIC COUNSELING; GENETIC SCREENING; HETEROZYGOTE DETECTION; HUMAN; HUMAN RELATION; HYPOTHESIS; IMMUNE DEFICIENCY; INTERVIEW; JUVENILE; MALE; MEDICAL INFORMATION; METHODOLOGY; NORMAL HUMAN; PARENT; PRIORITY JOURNAL; REPRODUCTION; SCHOOL CHILD; SIBLING; TELEPHONE; X CHROMOSOME RECESSIVE INHERITANCE;

EID: 0041818184     PISSN: 15524825     EISSN: None     Source Type: Journal    
DOI: 10.1002/ajmg.c.10007     Document Type: Conference Paper
Times cited : (26)

References (38)
  • 1
    • 0028872836 scopus 로고
    • Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents
    • American Society of Human Genetics Board of Directors and the American College of Medical Genetics Board of Director. 1995. Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Am J Hum Genet 57:1233-1241.
    • (1995) Am J Hum Genet , vol.57 , pp. 1233-1241
  • 3
    • 0027945216 scopus 로고
    • The genetic testing of children: Report of a working party of the Clinical Genetics Society (UK)
    • Clarke A. 1994. The genetic testing of children: report of a working party of the Clinical Genetics Society (UK). J Med Genet 31:785-797.
    • (1994) J Med Genet , vol.31 , pp. 785-797
    • Clarke, A.1
  • 4
    • 0041487768 scopus 로고    scopus 로고
    • Introduction
    • Clarke A, editor. Washington, DC: BIOS Scientific Publishers
    • Clarke A. 1998. Introduction. In: Clarke A, editor. The genetic testing of children. Washington, DC: BIOS Scientific Publishers. p 1-15.
    • (1998) The Genetic Testing of Children , pp. 1-15
    • Clarke, A.1
  • 7
    • 0030972226 scopus 로고    scopus 로고
    • Developmental tasks of childhood and adolescence: Implications for genetic testing
    • Fanos JH. 1997. Developmental tasks of childhood and adolescence: implications for genetic testing. Am J Med Genet 71:22-28.
    • (1997) Am J Med Genet , vol.71 , pp. 22-28
    • Fanos, J.H.1
  • 8
    • 0032822883 scopus 로고    scopus 로고
    • The missing link in linkage analysis: The well sibling revisited
    • Fanos JH. 1999. The missing link in linkage analysis: the well sibling revisited, Genet Test 3:273-278.
    • (1999) Genet Test , vol.3 , pp. 273-278
    • Fanos, J.H.1
  • 9
    • 0032871643 scopus 로고    scopus 로고
    • A mark on the arm: Myths of carrier status in siblings of individuals with ataxia-telangiectasia
    • Fanos JH, Gatti RA. 1999. A mark on the arm: myths of carrier status in siblings of individuals with ataxia-telangiectasia. Am J Med Genet 86:338-346.
    • (1999) Am J Med Genet , vol.86 , pp. 338-346
    • Fanos, J.H.1    Gatti, R.A.2
  • 10
    • 0029011920 scopus 로고
    • Perception of carrier status by cystic fibrosis siblings
    • Fanos JH, Johnson JR 1995a. Perception of carrier status by cystic fibrosis siblings. Am J Hum Genet 57:431-438.
    • (1995) Am J Hum Genet , vol.57 , pp. 431-438
    • Fanos, J.H.1    Johnson, J.R.2
  • 11
    • 0029091299 scopus 로고
    • Barriers to carrier testing for adult cystic fibrosis sibs: The importance of not knowing
    • Fanos JH, Johnson JP, 1995b. Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing. Am J Med Genet 59:85-91.
    • (1995) Am J Med Genet , vol.59 , pp. 85-91
    • Fanos, J.H.1    Johnson, J.P.2
  • 12
    • 0033452444 scopus 로고    scopus 로고
    • Never again joy without sorrow: The effect on parents of a child with ataxia-telangiectasia
    • Fanos JH, Mackintosh M. 1999. Never again joy without sorrow: the effect on parents of a child with ataxia-telangiectasia. Am J Med Genet 87:413-419.
    • (1999) Am J Med Genet , vol.87 , pp. 413-419
    • Fanos, J.H.1    Mackintosh, M.2
  • 13
    • 0035157769 scopus 로고    scopus 로고
    • Family pictures: Growing up with a brother with X-linked severe combined immunodeficiency
    • Fanos JH, Puck JM. 2001. Family pictures: growing up with a brother with X-linked severe combined immunodeficiency. Am J Med Genet 98:57-63.
    • (2001) Am J Med Genet , vol.98 , pp. 57-63
    • Fanos, J.H.1    Puck, J.M.2
  • 14
    • 0035149760 scopus 로고    scopus 로고
    • Sib Understanding of genetics and attitudes toward carrier testing for X-linked severe combined immunodeficiency
    • Fanos JH, Davis J, Puck JM. 2001. Sib Understanding of genetics and attitudes toward carrier testing for X-linked severe combined immunodeficiency. Am J Med Genet 98:46-56.
    • (2001) Am J Med Genet , vol.98 , pp. 46-56
    • Fanos, J.H.1    Davis, J.2    Puck, J.M.3
  • 15
    • 0022522050 scopus 로고
    • Communication within families about Duchenne muscular dystrophy
    • Fitzpatrick C, Barry C. 1986. Communication within families about Duchenne muscular dystrophy. Dev Med Child Neurol 28:596-599.
    • (1986) Dev Med Child Neurol , vol.28 , pp. 596-599
    • Fitzpatrick, C.1    Barry, C.2
  • 16
    • 0006717907 scopus 로고    scopus 로고
    • Childhood testing for carrier status: The perspective of the Genetic Interest Group
    • Clarke A. editor. Washington, DC: BIOS Scientific Publishers
    • Gillott J. 1998. Childhood testing for carrier status: the perspective of the Genetic Interest Group. In: Clarke A. editor. The genetic testing of children. Washington, DC: BIOS Scientific Publishers. p 97-102.
    • (1998) The Genetic Testing of Children , pp. 97-102
    • Gillott, J.1
  • 18
    • 0003442547 scopus 로고    scopus 로고
    • Adolescent growth and development
    • Hofmann AD, Greydanus DE, editors. Stam ford, CT: Appleton and Lange
    • Hofmann AD. 1997. Adolescent growth and development. In: Hofmann AD, Greydanus DE, editors. Adolescent medicine. Stam ford, CT: Appleton and Lange. p 10-22.
    • (1997) Adolescent Medicine , pp. 10-22
    • Hofmann, A.D.1
  • 19
    • 2442725198 scopus 로고    scopus 로고
    • Carrier resting of children for two X-linked diseases in a family based setting: A retrospective long term psychosocial evaluation
    • Jarvinen O, Aalto AM, Lehesjoki AE, Lindlof M, Soderling I, Uutela A, Kaarianen H. 1999a. Carrier resting of children for two X-linked diseases in a family based setting: a retrospective long term psychosocial evaluation. J Med Genet 36:615-620.
    • (1999) J Med Genet , vol.36 , pp. 615-620
    • Jarvinen, O.1    Aalto, A.M.2    Lehesjoki, A.E.3    Lindlof, M.4    Soderling, I.5    Uutela, A.6    Kaarianen, H.7
  • 20
    • 0343503037 scopus 로고    scopus 로고
    • Carrier testing of children for two X-linked diseases: A retrospective evaluation of experience and satisfaction of subjects and their mothers
    • Jarvinen O, Lehesjoki AE, Lindlof M, Uutela A, Kaariainen H. 1999b. Carrier testing of children for two X-linked diseases: a retrospective evaluation of experience and satisfaction of subjects and their mothers. Genet Test 3:347-355.
    • (1999) Genet Test , vol.3 , pp. 347-355
    • Jarvinen, O.1    Lehesjoki, A.E.2    Lindlof, M.3    Uutela, A.4    Kaariainen, H.5
  • 21
    • 0034528371 scopus 로고    scopus 로고
    • A retrospective study of long-term psychosocial consequences and satisfaction after carrier testing in childhood in an autosomal recessive disease: Aspartylglucosaminuria
    • Jarvinen O, Hietala M, Aalto AM, Arvio M, Uutela A, Aula P, Kaariainen H. 2000. A retrospective study of long-term psychosocial consequences and satisfaction after carrier testing in childhood in an autosomal recessive disease: aspartylglucosaminuria. Clin Genet 58:447-454.
    • (2000) Clin Genet , vol.58 , pp. 447-454
    • Jarvinen, O.1    Hietala, M.2    Aalto, A.M.3    Arvio, M.4    Uutela, A.5    Aula, P.6    Kaariainen, H.7
  • 22
    • 33646207398 scopus 로고    scopus 로고
    • On the receiving end of genetic medicine
    • Clarke A, editor. Washington, DC: BIOS Scientific Publishers
    • Lavery C. 1998. On the receiving end of genetic medicine. In: Clarke A, editor. The genetic testing of children. Washington, DC: BIOS Scientific Publishers. p 47-50.
    • (1998) The Genetic Testing of Children , pp. 47-50
    • Lavery, C.1
  • 23
    • 0030809075 scopus 로고    scopus 로고
    • Primary inherited defects in neutrophil function: Etiology and treatment
    • Malech HL, Nauseef WM. 1997. Primary inherited defects in neutrophil function: etiology and treatment. Sem Hemat 34:279-290.
    • (1997) Sem Hemat , vol.34 , pp. 279-290
    • Malech, H.L.1    Nauseef, W.M.2
  • 26
    • 0012533708 scopus 로고    scopus 로고
    • Predictive genetic testing in children: The need for psychological research
    • Clarke A, editor. Washington, DC: BIOS Scientific Publishers
    • Michie S, Marteau TM. 1998. Predictive genetic testing in children: the need for psychological research. In: Clarke A, editor. The genetic testing of children. Washington, DC: BIOS Scientific Publishers. p 169-179.
    • (1998) The Genetic Testing of Children , pp. 169-179
    • Michie, S.1    Marteau, T.M.2
  • 28
    • 0000794907 scopus 로고
    • Toward a new conceptualization and operationalization of risk perception within the genetic counseling domain
    • Palmer CGS, Sainfort F. 1993. Toward a new conceptualization and operationalization of risk perception within the genetic counseling domain. J Genet Counsel 2:275-294.
    • (1993) J Genet Counsel , vol.2 , pp. 275-294
    • Palmer, C.G.S.1    Sainfort, F.2
  • 29
    • 0029610328 scopus 로고
    • Developmental issues infiuencing guidelines for adolescent health research: A review
    • Petersen AC, Leffert N. 1995. Developmental issues infiuencing guidelines for adolescent health research: a review. J Adolesc Health 17:298-305.
    • (1995) J Adolesc Health , vol.17 , pp. 298-305
    • Petersen, A.C.1    Leffert, N.2
  • 31
    • 84963159862 scopus 로고
    • Perception of risk in genetic counseling
    • Shiloh S, Saxe L. 1989. Perception of risk in genetic counseling. Psychol Health 3:45-61.
    • (1989) Psychol Health , vol.3 , pp. 45-61
    • Shiloh, S.1    Saxe, L.2
  • 32
    • 0004215041 scopus 로고    scopus 로고
    • Holtzman NA, Watson M, editors. Bethesda, MD: National Institutes of Health
    • Task Force on Genetic Testing, NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research. 1997. In: Holtzman NA, Watson M, editors. Promoting safe and effective genetic testing in the United States: principles and recommendations. Bethesda, MD: National Institutes of Health.
    • (1997) Promoting Safe and Effective Genetic Testing in the United States: Principles and Recommendations
  • 34
    • 0030807885 scopus 로고    scopus 로고
    • Laboratory policies and practices for the genetic testing of children: A survey of the helix network
    • Wertz DC, Reilly PP,. 1997. Laboratory policies and practices for the genetic testing of children: a survey of the helix network. Am J Hum Genet 61:1163-1168.
    • (1997) Am J Hum Genet , vol.61 , pp. 1163-1168
    • Wertz, D.C.1    Reilly, P.P.2
  • 35
    • 0028132846 scopus 로고
    • Genetic testing for children and adolescents: Who decides?
    • Wertz DC, Fanos JH, Reilly PR. 1994. Genetic testing for children and adolescents: who decides? JAMA 272:875-881.
    • (1994) JAMA , vol.272 , pp. 875-881
    • Wertz, D.C.1    Fanos, J.H.2    Reilly, P.R.3
  • 38
    • 0021259895 scopus 로고
    • A private view of heterozygosity: Eight-year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal
    • Zeesman S, Clow CL, Cartier L, Scriver CR,. 1984. A private view of heterozygosity: eight-year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal. Am J Med Genet 18:769-778.
    • (1984) Am J Med Genet , vol.18 , pp. 769-778
    • Zeesman, S.1    Clow, C.L.2    Cartier, L.3    Scriver, C.R.4


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