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Volumn 7, Issue 2, 2003, Pages 123-130

Professional and personal attitudes about access and confidentiality in the genetic testing of children: A pilot study

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ATTITUDE; CLINICAL GENETICS; CONFIDENTIALITY; ETHICS; FAMILY; GENETIC ANALYSIS; HUMAN; INTERPERSONAL COMMUNICATION; INTERVIEW; PREDICTION;

EID: 0038491494     PISSN: 10906576     EISSN: None     Source Type: Journal    
DOI: 10.1089/109065703322146803     Document Type: Article
Times cited : (24)

References (45)
  • 2
    • 0028959392 scopus 로고
    • Informed consent, parental permission, and assent in pediatric practice
    • AMERICAN ACADEMY OF PEDIATRICS (AAP), COMMITTEE ON BIOETHICS. (1995). Informed Consent, Parental Permission, and Assent in Pediatric Practice. Pediatrics 95, 314-317.
    • (1995) Pediatrics , vol.95 , pp. 314-317
  • 3
    • 0029846929 scopus 로고    scopus 로고
    • Newborn screening fact sheet
    • AMERICAN ACADEMY OF PEDIATRICS (AAP), COMMITTEE ON GENETICS. (1996). Newborn Screening Fact Sheet. Pediatrics 98, 473-501.
    • (1996) Pediatrics , vol.98 , pp. 473-501
  • 4
    • 0038624107 scopus 로고    scopus 로고
    • Ethical issues with genetic testing in pediatrics
    • AMERICAN ACADEMY OF PEDIATRICS (AAP), COMMITTEE ON GENETICS. (2001). Ethical Issues with Genetic Testing in Pediatrics. Pediatrics 107, 1451-1455.
    • (2001) Pediatrics , vol.107 , pp. 1451-1455
  • 5
    • 0028872836 scopus 로고
    • Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents
    • AMERICAN SOCIETY OF HUMAN GENETICS (ASHG)/AMERICAN COLLEGE OF MEDICAL GENETICS (ACMG). (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
  • 6
    • 0031911191 scopus 로고    scopus 로고
    • ASHG statement: Professional disclosure of familial genetic information
    • AMERICAN SOCIETY OF HUMAN GENETICS (ASHG) SOCIAL ISSUES SUBCOMMITTEE ON FAMILIAL DISCLOSURE. (1998). ASHG statement: professional disclosure of familial genetic information. Am. J. Hum. Genet. 62, 474-483.
    • (1998) Am. J. Hum. Genet. , vol.62 , pp. 474-483
  • 7
    • 0029443996 scopus 로고
    • Drafting the genetic privacy act: Science, policy and practical considerations
    • ANNAS, G.J., GLANTZ, L.H., and ROCHE, P.A. (1995). Drafting the genetic privacy act: science, policy and practical considerations. J. Law. Med. Ethics 23, 360-366.
    • (1995) J. Law. Med. Ethics , vol.23 , pp. 360-366
    • Annas, G.J.1    Glantz, L.H.2    Roche, P.A.3
  • 8
    • 0004123474 scopus 로고
    • transl by T. Irwin. Hackett Publishing Co., Indianapolis, IN. 441 pp
    • ARISTOTLE. (1985). Nichomachean Ethics, transl by T. Irwin. Hackett Publishing Co., Indianapolis, IN. 441 pp.
    • (1985) Nichomachean Ethics
    • Aristotle1
  • 9
    • 0031015541 scopus 로고    scopus 로고
    • Female and male physicians' attitudes toward prenatal diagnosis: A pan-Canadian survey
    • BOUCHARD, L., and RENAUD, M. (1997). Female and male physicians' attitudes toward prenatal diagnosis: a pan-Canadian survey. Social Sci. Med. 44, 381-392.
    • (1997) Social Sci. Med. , vol.44 , pp. 381-392
    • Bouchard, L.1    Renaud, M.2
  • 10
    • 0033231821 scopus 로고    scopus 로고
    • Life-sustaining treatments: What doctors do, what they want for themselves and what elderly persons want
    • CARMEL, S. (1999). Life-sustaining treatments: what doctors do, what they want for themselves and what elderly persons want. Social Sci. Med. 49, 1401-1408.
    • (1999) Social Sci. Med. , vol.49 , pp. 1401-1408
    • Carmel, S.1
  • 11
    • 0003561981 scopus 로고    scopus 로고
    • The genetic testing of children: A clinical perspective
    • A.J. Clarke (ed.). Bios Scientific Publishers Ltd., Oxford, UK
    • CLARKE, A., and FLINTER, F. (1998). The genetic testing of children: a clinical perspective. In A.J. Clarke (ed.). The Genetic Testing of Children. Bios Scientific Publishers Ltd., Oxford, UK. pp 91-102.
    • (1998) The Genetic Testing of Children , pp. 91-102
    • Clarke, A.1    Flinter, F.2
  • 12
    • 0031157710 scopus 로고    scopus 로고
    • Genetic testing in children
    • CLAYTON, E.W. (1997). Genetic testing in children. J. Med. Phil. 22, 233-251.
    • (1997) J. Med. Phil. , vol.22 , pp. 233-251
    • Clayton, E.W.1
  • 13
    • 0027511357 scopus 로고
    • Council report: Confidential health services for adolescents
    • COUNCIL ON SCIENTIFIC AFFAIRS OF THE AMERICAN MEDICAL ASSOCIATION. (1993). Council Report: Confidential Health Services for Adolescents. J. Am. Med. Assn. 269, 1420-1424.
    • (1993) J. Am. Med. Assn. , vol.269 , pp. 1420-1424
  • 14
    • 0029059310 scopus 로고
    • GIG (Genetic Interest Group) response to the UK Clinical Genetics Society report 'The genetic testing of children'
    • DALBY, S. (1995). GIG (Genetic Interest Group) response to the UK Clinical Genetics Society report 'The genetic testing of children.' J. Med. Genet. 32, 490-491.
    • (1995) J. Med. Genet. , vol.32 , pp. 490-491
    • Dalby, S.1
  • 15
    • 0031289624 scopus 로고    scopus 로고
    • Genetic dilemmas and the child's right to an open future
    • DAVIS, D.S. (1997). Genetic dilemmas and the child's right to an open future. Rutgers Law J. 28, 549-592.
    • (1997) Rutgers Law J. , vol.28 , pp. 549-592
    • Davis, D.S.1
  • 17
    • 85047693277 scopus 로고
    • Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive?
    • GELLER, G., TAMBOR, E.S., CHASE, G.A., HOFMAN, K.J., FADEN, R.R., and HOLTZMAN, N.A. (1993). Incorporation of genetics in primary care practice. Will physicians do the counseling and will they be directive? Arch. Fam. Med. 2, 1119-1125.
    • (1993) Arch. Fam. Med. , vol.2 , pp. 1119-1125
    • Geller, G.1    Tambor, E.S.2    Chase, G.A.3    Hofman, K.J.4    Faden, R.R.5    Holtzman, N.A.6
  • 19
    • 0004782060 scopus 로고
    • In search of an ethics of personal relationships
    • G Graham and H LaFollette (eds.). Temple University Press, Philadelphia
    • HARDWIG, J. (1989). In Search of an Ethics of Personal Relationships. In Person to Person. G Graham and H LaFollette (eds.). Temple University Press, Philadelphia, pp. 63-81.
    • (1989) Person to Person , pp. 63-81
    • Hardwig, J.1
  • 20
    • 0029440688 scopus 로고
    • Testing children for genetic predispositions: Is it in their best interest?
    • HOFFMANN, D.E., and WULFSBERG, E.A. (1995). Testing children for genetic predispositions: is it in their best interest? J. Law Med. Ethics 23, 331-344.
    • (1995) J. Law Med. Ethics , vol.23 , pp. 331-344
    • Hoffmann, D.E.1    Wulfsberg, E.A.2
  • 21
    • 0025990218 scopus 로고
    • What drives neonatal screening programs?
    • HOLTZMAN, N.A. (1991). What drives neonatal screening programs? N. Engl. J. Med. 325, 802-804.
    • (1991) N. Engl. J. Med. , vol.325 , pp. 802-804
    • Holtzman, N.A.1
  • 22
    • 0027284825 scopus 로고
    • Primary care physicians as providers of frontline genetic services
    • HOLTZMAN, N.A. (1993). Primary care physicians as providers of frontline genetic services. Fetal Diagn. Ther. 8 (Suppl 1), 213-219.
    • (1993) Fetal Diagn. Ther. , vol.8 , Issue.SUPPL. 1 , pp. 213-219
    • Holtzman, N.A.1
  • 24
    • 0026555895 scopus 로고
    • Is there a doctor in the house? An analysis of the practice of physicians' treating their own families
    • LA PUMA, J., and PRIEST, E.R. (1992). Is there a doctor in the house? An analysis of the practice of physicians' treating their own families. J. Am. Med. Assn. 267, 1810-1812.
    • (1992) J. Am. Med. Assn. , vol.267 , pp. 1810-1812
    • La Puma, J.1    Priest, E.R.2
  • 25
    • 0026092138 scopus 로고
    • When physicians treat members of their own families; practices in a community hospital
    • LA PUMA, J., STOCKING, C.B., LA VOIE, D., and DARLING, C.A. (1991). When physicians treat members of their own families; practices in a community hospital. N. Engl. J. Med. 325, 1290-1294.
    • (1991) N. Engl. J. Med. , vol.325 , pp. 1290-1294
    • La Puma, J.1    Stocking, C.B.2    La Voie, D.3    Darling, C.A.4
  • 26
    • 0034672098 scopus 로고    scopus 로고
    • Disclosure of familial genetic information: Perceptions of the duty to inform
    • LEHMANN, L.S., WEEKS, J.C., KLAR, N., BIENER, L., and GARBER, J.E. (2000). Disclosure of familial genetic information: perceptions of the duty to inform. Am. J. Med. 109, 705-711.
    • (2000) Am. J. Med. , vol.109 , pp. 705-711
    • Lehmann, L.S.1    Weeks, J.C.2    Klar, N.3    Biener, L.4    Garber, J.E.5
  • 27
    • 0027988079 scopus 로고
    • Counselling following diagnosis of a fetal abnormality: The differing approaches of obstetricians, clinical geneticists, and genetic nurses
    • MARTEAU, T., DRAKE, H., and BOBROW, M. (1994). Counselling following diagnosis of a fetal abnormality: the differing approaches of obstetricians, clinical geneticists, and genetic nurses. J. Med. Genet. 31, 864-867.
    • (1994) J. Med. Genet. , vol.31 , pp. 864-867
    • Marteau, T.1    Drake, H.2    Bobrow, M.3
  • 28
    • 0012533708 scopus 로고    scopus 로고
    • Predictive genetic testing in children: The need for psychological research
    • AJ Clarke (ed.). Bios Scientific Publishers Ltd., Oxford
    • MICHIE, S., and MARTEAU, T.M. (1998). Predictive genetic testing in children: the need for psychological research. In The Genetic Testing of Children. AJ Clarke (ed.). Bios Scientific Publishers Ltd., Oxford, pp. 169-181.
    • (1998) The Genetic Testing of Children , pp. 169-181
    • Michie, S.1    Marteau, T.M.2
  • 29
    • 0028676686 scopus 로고
    • Physician-patient confidentiality and familial access to genetic information
    • MILLER, J. (1994). Physician-patient confidentiality and familial access to genetic information. Health Law J. 2, 141-148.
    • (1994) Health Law J. , vol.2 , pp. 141-148
    • Miller, J.1
  • 30
    • 0033844765 scopus 로고    scopus 로고
    • Serving the family from birth to the medical home
    • NEWBORN SCREENING TASK FORCE. (2000). Serving the family from birth to the medical home. Pediatrics 106 (Suppl), 383-427.
    • (2000) Pediatrics , vol.106 , Issue.SUPPL. , pp. 383-427
  • 31
    • 0029680164 scopus 로고    scopus 로고
    • Disclosure of Duchenne muscular dystrophy after newborn screening
    • PARSONS, E., BRADLEY, D., and CLARKE, A. (1996). Disclosure of Duchenne muscular dystrophy after newborn screening. Arch. Dis. Child. 74, 550-553.
    • (1996) Arch. Dis. Child. , vol.74 , pp. 550-553
    • Parsons, E.1    Bradley, D.2    Clarke, A.3
  • 32
    • 0029648982 scopus 로고    scopus 로고
    • Pate v. Threkel, 661 So. 2d 278 (FL 1995)
    • PATE V. THREKEL, 661 So. 2d 278 (FL 1995).
  • 33
    • 0025775262 scopus 로고
    • The duty to disclose to relatives in medical genetics: A legal perspective
    • PELIAS, M.Z. (1991). The duty to disclose to relatives in medical genetics: a legal perspective. Am. J. Med. Genet. 39, 347-354.
    • (1991) Am. J. Med. Genet. , vol.39 , pp. 347-354
    • Pelias, M.Z.1
  • 34
    • 85047694602 scopus 로고
    • "Common sense and a thick hide": Physicians providing care to their own family members
    • REAGAN, B., REAGAN, P., and SINCLAIR, A. (1994). "Common sense and a thick hide": physicians providing care to their own family members. Arch. Fam. Med. 3, 599-604.
    • (1994) Arch. Fam. Med. , vol.3 , pp. 599-604
    • Reagan, B.1    Reagan, P.2    Sinclair, A.3
  • 35
    • 12444331260 scopus 로고    scopus 로고
    • Safer v. Estate of Pack, 677 A. 2d 1188 (N.J. Super. A.D., 1996).
    • SAFER V. ESTATE OF PACK, 677 A. 2d 1188 (N.J. Super. A.D., 1996).
  • 36
    • 0032539166 scopus 로고    scopus 로고
    • "Doctoring" doctors and their families
    • SCHNECK, S.A. (1998). "Doctoring" doctors and their families. J. Am. Med. Assn. 280, 2039-2042.
    • (1998) J. Am. Med. Assn. , vol.280 , pp. 2039-2042
    • Schneck, S.A.1
  • 37
    • 0034671590 scopus 로고    scopus 로고
    • On warning families about genetic risk: The ghost of Tarasoff
    • SULMASY, D.P. (2000). On warning families about genetic risk: the ghost of Tarasoff. Am. J. Med. 109, 738-739.
    • (2000) Am. J. Med. , vol.109 , pp. 738-739
    • Sulmasy, D.P.1
  • 38
    • 0027619681 scopus 로고
    • Whose genes are these anyway? Familial conflicts over access to genetic information
    • SUTER, S.M. (1993). Whose genes are these anyway? Familial conflicts over access to genetic information. Michigan Law Rev. 91, 1854-1908.
    • (1993) Michigan Law Rev. , vol.91 , pp. 1854-1908
    • Suter, S.M.1
  • 39
    • 12444319582 scopus 로고    scopus 로고
    • Tarasoff v. Regents of the University of California 551 P. 2d 334 [CA, 1976] [en banc]. (1976)
    • TARASOFF V. REGENTS OF THE UNIVERSITY OF CALIFORNIA 551 P. 2d 334 [CA, 1976] [en banc]. (1976).
  • 40
    • 0032492148 scopus 로고    scopus 로고
    • Neonatal screening for cystic fibrosis: No evidence yet of any benefit
    • WALD, N.J., and MORRIS, J.K. (1998). Neonatal screening for cystic fibrosis: no evidence yet of any benefit. Br. Med. J. 316, 404-405.
    • (1998) Br. Med. J. , vol.316 , pp. 404-405
    • Wald, N.J.1    Morris, J.K.2
  • 42
    • 0023935508 scopus 로고
    • Attitudes of genetic counselors: A multinational survey
    • WERTZ, D.C., and FLETCHER, J.C. (1988). Attitudes of genetic counselors: a multinational survey. Am. J. Hum. Genet. 42, 592-600.
    • (1988) Am. J. Hum. Genet. , vol.42 , pp. 592-600
    • Wertz, D.C.1    Fletcher, J.C.2
  • 43
    • 0030807885 scopus 로고    scopus 로고
    • Laboratory policies and practices for the genetic testing of children: A survey of the helix network
    • WERTZ, D.C., and REILLY, P.R. (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.R.2
  • 44
    • 0027945216 scopus 로고
    • The genetic testing of children
    • WORKING PARTY OF THE CLINICAL GENETICS SOCIETY (UK). (1994). The genetic testing of children. J. Med. Genet. 31, 785-797.
    • (1994) J. Med. Genet. , vol.31 , pp. 785-797
  • 45
    • 0016769512 scopus 로고
    • Newborn screening for Duchenne muscular dystrophy
    • ZELLWEGER, H., and ANTONIK, A. (1975). Newborn screening for Duchenne muscular dystrophy. Pediatrics 55, 30-34.
    • (1975) Pediatrics , vol.55 , pp. 30-34
    • Zellweger, H.1    Antonik, A.2


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