메뉴 건너뛰기




Volumn 54, Issue , 2003, Pages 393-407

Genetic Privacy

Author keywords

Duty to warn; Genetic exceptionalism; Genetic testing; Medical confidentiality

Indexed keywords

CONFIDENTIALITY; FAMILIAL DISEASE; GENETIC ANALYSIS; GENETIC COUNSELING; GOVERNMENT; HUMAN; INFORMATION; INFORMED CONSENT; MEDICAL RESEARCH; PRIORITY JOURNAL; PRIVACY; PUBLIC OPINION; REVIEW; UNITED STATES; GENETIC PREDISPOSITION; GENETIC PRIVACY; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; INTERPERSONAL COMMUNICATION; LEGAL ASPECT;

EID: 0038654365     PISSN: 00664219     EISSN: None     Source Type: Book Series    
DOI: 10.1146/annurev.med.54.101601.152131     Document Type: Review
Times cited : (49)

References (69)
  • 2
    • 0030759522 scopus 로고    scopus 로고
    • Genetic testing for susceptibility to breast cancer: Findings from women's focus groups
    • Tessaro I, Borstelmann N, Regan K, et al. 1997. Genetic testing for susceptibility to breast cancer: findings from women's focus groups. J. Women's Health 6:317-27
    • (1997) J. Women's Health , vol.6 , pp. 317-327
    • Tessaro, I.1    Borstelmann, N.2    Regan, K.3
  • 3
    • 0029677157 scopus 로고    scopus 로고
    • Individual, family, and societal dimensions of genetic discrimination: A case study analysis
    • Geller LN, Alper JS, Billings PR, et al. 1996. Individual, family, and societal dimensions of genetic discrimination: a case study analysis. Sci. Eng. Ethics 2:71-88
    • (1996) Sci. Eng. Ethics , vol.2 , pp. 71-88
    • Geller, L.N.1    Alper, J.S.2    Billings, P.R.3
  • 4
    • 25744442016 scopus 로고    scopus 로고
    • Clinton targets misuse of gene data; anti-bias order covers agencies
    • Feb. 9
    • Gillis J. 2000. Clinton targets misuse of gene data; anti-bias order covers agencies. Washington Post, Feb. 9, p. A19
    • (2000) Washington Post
    • Gillis, J.1
  • 5
    • 0242650539 scopus 로고    scopus 로고
    • Molecular diagnostics in U.S. clinical laboratories
    • Italy, May 13-16
    • Amos J. 1999. Molecular diagnostics in U.S. clinical laboratories. Presented at Mutations in the Human Genome Conference, Italy, May 13-16; http://www.gene. ucl.ac.uk/hugo/mut_det_abst-bk.html
    • (1999) Mutations in the Human Genome Conference
    • Amos, J.1
  • 6
    • 0033924645 scopus 로고    scopus 로고
    • Laws restricting health insurers' use of genetic information: Impact on genetic discrimination
    • Hall MA, Rich SS. 2000. Laws restricting health insurers' use of genetic information: impact on genetic discrimination. Am. J. Hum. Genet. 66:293-307
    • (2000) Am. J. Hum. Genet. , vol.66 , pp. 293-307
    • Hall, M.A.1    Rich, S.S.2
  • 7
    • 0029443996 scopus 로고
    • Drafting the Genetic Privacy Act: Science, policy, and practical considerations
    • Annas GJ, Glantz LH, Roche PA. 1995. Drafting the Genetic Privacy Act: science, policy, and practical considerations. J. Law Med. Ethics 23:360-66
    • (1995) J. Law Med. Ethics , vol.23 , pp. 360-366
    • Annas, G.J.1    Glantz, L.H.2    Roche, P.A.3
  • 17
    • 0036498727 scopus 로고    scopus 로고
    • Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers
    • Scheuer L, Kauff N, Robson M, et al. 2002. Outcome of preventive surgery and screening for breast and ovarian cancer in BRCA mutation carriers. J. Clin. Oncol. 20:1260-68
    • (2002) J. Clin. Oncol. , vol.20 , pp. 1260-1268
    • Scheuer, L.1    Kauff, N.2    Robson, M.3
  • 18
    • 0034631316 scopus 로고    scopus 로고
    • Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation
    • Meijers-Heijboer EJ, Verhoog LC, Brekelmans CT, et al. 2000. Presymptomatic DNA testing and prophylactic surgery in families with a BRCA1 or BRCA2 mutation. Lancet 355:2015-20
    • (2000) Lancet , vol.355 , pp. 2015-2020
    • Meijers-Heijboer, E.J.1    Verhoog, L.C.2    Brekelmans, C.T.3
  • 19
    • 0034015047 scopus 로고    scopus 로고
    • Attitude toward prophylactic surgery and effects of genetic counselling in families with BRCA mutations
    • Austrian Hereditary Breast and Ovarian Cancer Group
    • Wagner TM, Moslinger R, Langbauer G, et al. 2000. Attitude toward prophylactic surgery and effects of genetic counselling in families with BRCA mutations. Austrian Hereditary Breast and Ovarian Cancer Group. Br. J. Cancer 82:1249-53
    • (2000) Br. J. Cancer , vol.82 , pp. 1249-1253
    • Wagner, T.M.1    Moslinger, R.2    Langbauer, G.3
  • 23
    • 0029831202 scopus 로고    scopus 로고
    • Genetic discrimination: Perspectives of consumers
    • Lapham EV, Kozma C, Weiss JO. 1996. Genetic discrimination: perspectives of consumers. Science 274:621-24
    • (1996) Science , vol.274 , pp. 621-624
    • Lapham, E.V.1    Kozma, C.2    Weiss, J.O.3
  • 25
    • 0242651085 scopus 로고    scopus 로고
    • Unlocking secrets, closing doors
    • Jan. 14
    • Porner P. 2001. Unlocking secrets, closing doors. Chicago Tribune, Jan. 14, p. 1
    • (2001) Chicago Tribune , pp. 1
    • Porner, P.1
  • 28
    • 0026609094 scopus 로고
    • Discrimination as a consequence of genetic testing
    • Billings PR, Kohn MA, Cuevas MD, et al. 1992. Discrimination as a consequence of genetic testing. Am. J. Hum. Genet. 50: 476-82
    • (1992) Am. J. Hum. Genet. , vol.50 , pp. 476-482
    • Billings, P.R.1    Kohn, M.A.2    Cuevas, M.D.3
  • 29
    • 0032726986 scopus 로고    scopus 로고
    • Efforts to regulate the collection and use of genetic information
    • Reilly PR. 1999. Efforts to regulate the collection and use of genetic information. Arch. Pathol. Lab. Med. 123:1066-70
    • (1999) Arch. Pathol. Lab. Med. , vol.123 , pp. 1066-1070
    • Reilly, P.R.1
  • 30
    • 0242651084 scopus 로고    scopus 로고
    • Appendix 6. Scientific advances and social risks: Historical perspectives of genetic screening programs for sickle cell disease, Tay-Sachs disease, neural tube defects and Down syndrome, 1970-1997
    • ed. NA Holtzman, MS Watson. Oak Ridge, TN: Natl. Inst. Health-Dep. Energy Working Group on Ethical, Legal, Social Implic. of Hum. Genome Res.
    • Markel H. 1997. Appendix 6. Scientific advances and social risks: historical perspectives of genetic screening programs for sickle cell disease, Tay-Sachs disease, neural tube defects and Down syndrome, 1970-1997. In Final Report of the Task Force on Genetic Testing: Promoting Safe and Effective Genetic Testing in the United States, ed. NA Holtzman, MS Watson. Oak Ridge, TN: Natl. Inst. Health-Dep. Energy Working Group on Ethical, Legal, Social Implic. of Hum. Genome Res.
    • (1997) Final Report of the Task Force on Genetic Testing: Promoting Safe and Effective Genetic Testing in the United States
    • Markel, H.1
  • 31
    • 0005484258 scopus 로고
    • Reflections on the new biology
    • 29a. Pauling L. 1968. Reflections on the new biology. UCLA Law Rev. 15:267
    • (1968) UCLA Law Rev. , vol.15 , pp. 267
    • Pauling, L.1
  • 32
  • 33
    • 0034770853 scopus 로고    scopus 로고
    • Categorizing genetic tests to identify their ethical, legal, and social implications
    • Burke W, Pinsky LA, Press NA. 2001. Categorizing genetic tests to identify their ethical, legal, and social implications. Am. J. Med. Genet. 106:233-40
    • (2001) Am. J. Med. Genet. , vol.106 , pp. 233-240
    • Burke, W.1    Pinsky, L.A.2    Press, N.A.3
  • 34
    • 0010045398 scopus 로고    scopus 로고
    • Secretary's Advisory Committee on Genetic Testing
    • Department of Health and Human Services. 2000. Secretary's Advisory Committee on Genetic Testing. Fed. Regist. 65:21094-111
    • (2000) Fed. Regist. , vol.65 , pp. 21094-21111
  • 35
    • 0003045347 scopus 로고    scopus 로고
    • "First do no harm" also applies to cancer susceptibility testing
    • Burke W, Kahn M, Garber J, Collins F. 1996. "First do no harm" also applies to cancer susceptibility testing. Cancer J. Sci. Am. 2:250-52
    • (1996) Cancer J. Sci. Am. , vol.2 , pp. 250-252
    • Burke, W.1    Kahn, M.2    Garber, J.3    Collins, F.4
  • 36
    • 0028843102 scopus 로고
    • Breast and ovarian cancer incidence in BRCA1-mutation carriers
    • Breast Cancer Linkage Consortium
    • Easton DF, Ford D, Bishop DT. 1995. Breast and ovarian cancer incidence in BRCA1-mutation carriers. Breast Cancer Linkage Consortium. Am. J. Hum. Genet. 56:265-71
    • (1995) Am. J. Hum. Genet. , vol.56 , pp. 265-271
    • Easton, D.F.1    Ford, D.2    Bishop, D.T.3
  • 37
    • 17344365851 scopus 로고    scopus 로고
    • Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families
    • The Breast Cancer Linkage Consortium
    • Ford D, Easton DF, Stratton M, et al. 1998. Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. Am. J. Hum. Genet. 62:676-89
    • (1998) Am. J. Hum. Genet. , vol.62 , pp. 676-689
    • Ford, D.1    Easton, D.F.2    Stratton, M.3
  • 38
    • 0028826709 scopus 로고
    • Estimates of the gene frequency of BRCA1 and its contribution to breast and ovarian cancer incidence
    • Ford D, Easton DF, Peto J. 1995. Estimates of the gene frequency of BRCA1 and its contribution to breast and ovarian cancer incidence. Am. J. Hum. Genet. 51:1457-62
    • (1995) Am. J. Hum. Genet. , vol.51 , pp. 1457-1462
    • Ford, D.1    Easton, D.F.2    Peto, J.3
  • 39
    • 0028330276 scopus 로고
    • Risks of cancer in BRCA1-mutation carriers
    • Breast Cancer Linkage Consortium
    • Ford D, Easton DF, Bishop DT, et al. 1994. Risks of cancer in BRCA1-mutation carriers. Breast Cancer Linkage Consortium. Lancet 343:692-95
    • (1994) Lancet , vol.343 , pp. 692-695
    • Ford, D.1    Easton, D.F.2    Bishop, D.T.3
  • 40
    • 0035098503 scopus 로고    scopus 로고
    • Prevalence and penetrance of germline BRCA1 and BRCA2 mutations in a population series of 649 women with ovarian cancer
    • Risch HA, McLaughlin JR, Cole DE, et al. 2001. Prevalence and penetrance of germline BRCA1 and BRCA2 mutations in a population series of 649 women with ovarian cancer. Am. J. Hum. Genet. 68:700-10
    • (2001) Am. J. Hum. Genet. , vol.68 , pp. 700-710
    • Risch, H.A.1    McLaughlin, J.R.2    Cole, D.E.3
  • 42
    • 0034077997 scopus 로고    scopus 로고
    • Alcohol consumption, glutathione S-transferase M1 and T1 genetic polymorphisms and breast cancer risk
    • Park SK, Yoo KY, Lee SJ, et al. 2000. Alcohol consumption, glutathione S-transferase M1 and T1 genetic polymorphisms and breast cancer risk. Pharmacogenetics 10:301-9
    • (2000) Pharmacogenetics , vol.10 , pp. 301-309
    • Park, S.K.1    Yoo, K.Y.2    Lee, S.J.3
  • 43
    • 0032733346 scopus 로고    scopus 로고
    • The utility of apolipoprotein E genotyping in the diagnosis of Alzheimer disease in a community-based case series
    • Tsuang D, Larson EB, Bowen J, et al. 1999. The utility of apolipoprotein E genotyping in the diagnosis of Alzheimer disease in a community-based case series. Arch. Neurol. 56:1489-95
    • (1999) Arch. Neurol. , vol.56 , pp. 1489-1495
    • Tsuang, D.1    Larson, E.B.2    Bowen, J.3
  • 44
    • 0032977558 scopus 로고    scopus 로고
    • Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2
    • Bluman LG, Rimer BK, Berry DA, et al. 1999. Attitudes, knowledge, and risk perceptions of women with breast and/or ovarian cancer considering testing for BRCA1 and BRCA2. J. Clin. Oncol. 17:1040-46
    • (1999) J. Clin. Oncol. , vol.17 , pp. 1040-1046
    • Bluman, L.G.1    Rimer, B.K.2    Berry, D.A.3
  • 45
    • 0027502141 scopus 로고
    • Perception of risk in women with a family history of breast cancer
    • Evans DG, Burnell LD, Hopwood P, Howell A. 1993. Perception of risk in women with a family history of breast cancer. Br. J. Cancer 67:612-14
    • (1993) Br. J. Cancer , vol.67 , pp. 612-614
    • Evans, D.G.1    Burnell, L.D.2    Hopwood, P.3    Howell, A.4
  • 46
    • 0034584963 scopus 로고    scopus 로고
    • Breast cancer attitudes, knowledge, and screening behavior in women with and without a family history of breast cancer
    • Hailey B, Carter C, Burnett D. 2000. Breast cancer attitudes, knowledge, and screening behavior in women with and without a family history of breast cancer. Health Care Women Int. 21:701-15
    • (2000) Health Care Women Int. , vol.21 , pp. 701-715
    • Hailey, B.1    Carter, C.2    Burnett, D.3
  • 47
    • 0035104727 scopus 로고    scopus 로고
    • Risk perception and cancer worry: An exploratory study of the impact of genetic risk counseling in women with a family history of breast cancer
    • Hopwood P, Shenton A, Lalloo F, et al. 2001. Risk perception and cancer worry: an exploratory study of the impact of genetic risk counseling in women with a family history of breast cancer. J. Med. Genet. 38:139-42
    • (2001) J. Med. Genet. , vol.38 , pp. 139-142
    • Hopwood, P.1    Shenton, A.2    Lalloo, F.3
  • 48
    • 0030901262 scopus 로고    scopus 로고
    • The use and interpretation of commercial APC gene testing for familial adenomatous polyposis
    • Giardiello FM, Brensinger JD, Petersen GM, et al. 1997. The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. N. Engl. J. Med. 336:823-27
    • (1997) N. Engl. J. Med. , vol.336 , pp. 823-827
    • Giardiello, F.M.1    Brensinger, J.D.2    Petersen, G.M.3
  • 49
    • 0032227245 scopus 로고    scopus 로고
    • Are practicing and future physicians prepared to obtain informed consent? The case of genetic testing for susceptibility to breast cancer
    • James C, Geller G, Bernhardt BA, et al. 1998. Are practicing and future physicians prepared to obtain informed consent? The case of genetic testing for susceptibility to breast cancer. Community Genet. 1:203-12
    • (1998) Community Genet. , vol.1 , pp. 203-212
    • James, C.1    Geller, G.2    Bernhardt, B.A.3
  • 50
    • 0027179528 scopus 로고
    • Physicians' knowledge of genetics and genetic tests
    • Hofman KJ, Tambor ES, Chase GA, et al. 1993. Physicians' knowledge of genetics and genetic tests. Acad. Med. 68:625-32
    • (1993) Acad. Med. , vol.68 , pp. 625-632
    • Hofman, K.J.1    Tambor, E.S.2    Chase, G.A.3
  • 51
    • 0026276552 scopus 로고
    • The effect of education on physicians' knowledge of a laboratory test: The case of maternal serum alpha-fetoprotein screening
    • Holtzman NA, Faden RR, Leonard CO, et al. 1991. The effect of education on physicians' knowledge of a laboratory test: the case of maternal serum alpha-fetoprotein screening. J. Clin. Ethics 4:243-47
    • (1991) J. Clin. Ethics , vol.4 , pp. 243-247
    • Holtzman, N.A.1    Faden, R.R.2    Leonard, C.O.3
  • 52
    • 0026289497 scopus 로고
    • The interpretation of laboratory results: The paradoxical effect of medical training
    • Holtzman NA. 1991. The interpretation of laboratory results: the paradoxical effect of medical training. J. Clin. Ethics 2:241-43
    • (1991) J. Clin. Ethics , vol.2 , pp. 241-243
    • Holtzman, N.A.1
  • 53
    • 0033362082 scopus 로고    scopus 로고
    • Transmitting genetic risk information in families: Attitudes about disclosing the identity of relatives
    • Wilcke JT, Seersholm N, Kok-Jensen A, Dirksen A. 1999. Transmitting genetic risk information in families: attitudes about disclosing the identity of relatives. Am. J. Hum. Genet. 65:902-9
    • (1999) Am. J. Hum. Genet. , vol.65 , pp. 902-909
    • Wilcke, J.T.1    Seersholm, N.2    Kok-Jensen, A.3    Dirksen, A.4
  • 54
    • 0032921752 scopus 로고    scopus 로고
    • Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing
    • Goelen G, Rigo A, Bonduelle M, De Greve J. 1999. Moral concerns of different types of patients in clinical BRCA1/2 gene mutation testing. J. Clin. Oncol. 17:1595-600
    • (1999) J. Clin. Oncol. , vol.17 , pp. 1595-1600
    • Goelen, G.1    Rigo, A.2    Bonduelle, M.3    De Greve, J.4
  • 55
    • 0035017036 scopus 로고    scopus 로고
    • Motivations and concerns of patients with access to genetic testing for hereditary pancreatitis
    • Applebaum-Shapiro S, Peters J, O'Connell J, et al. 2001. Motivations and concerns of patients with access to genetic testing for hereditary pancreatitis. Am. J. Gastroenterol. 96:1610-17
    • (2001) Am. J. Gastroenterol. , vol.96 , pp. 1610-1617
    • Applebaum-Shapiro, S.1    Peters, J.2    O'Connell, J.3
  • 56
    • 0027248157 scopus 로고
    • Perceptions of predictive testing for Huntington's disease by young women: Preferring uncertainty to certainty?
    • Decruyenaere M, Evers-Kiebooms G, Van den Berghe H. 1993. Perceptions of predictive testing for Huntington's disease by young women: preferring uncertainty to certainty? J. Med. Genet. 30:551-61
    • (1993) J. Med. Genet. , vol.30 , pp. 551-561
    • Decruyenaere, M.1    Evers-Kiebooms, G.2    Van Den Berghe, H.3
  • 58
    • 0034627216 scopus 로고    scopus 로고
    • Results of genetic testing: When confidentiality conflicts with a duty to warn relatives
    • Leung W-C. 2000. Results of genetic testing: when confidentiality conflicts with a duty to warn relatives. BMJ 321:1464-65
    • (2000) BMJ , vol.321 , pp. 1464-1465
    • Leung, W.-C.1
  • 59
    • 0033018859 scopus 로고    scopus 로고
    • Cancer genetic counseling: Need for confidentiality versus responsibility to notify
    • Byers T, MacDonald DJ, Severin MJ, Fishbach AA. 1999. Cancer genetic counseling: need for confidentiality versus responsibility to notify. Cancer Prac. 7:93-95
    • (1999) Cancer Prac. , vol.7 , pp. 93-95
    • Byers, T.1    MacDonald, D.J.2    Severin, M.J.3    Fishbach, A.A.4
  • 60
    • 0031991614 scopus 로고    scopus 로고
    • ASHG statement: Professional disclosure of familial genetic information
    • American Society of Human Genetics, Social Issues Subcommittee on Familial Disclosure. 1998. ASHG statement: professional disclosure of familial genetic information. Am. J. Hum. Genet. 62:474-83
    • (1998) Am. J. Hum. Genet. , vol.62 , pp. 474-483
  • 61
    • 0242566573 scopus 로고
    • 661 So. 2d 278
    • 1995. Pate v. Threlkel, 661 So. 2d 278
    • (1995) Pate V. Threlkel
  • 62
    • 33846827532 scopus 로고    scopus 로고
    • 291 N.J. Super. 619, 677 A.2d 1188 (App. Div.), certification denied, 146 N.J. 568
    • 1996. Safer v. Estate of Pack, 291 N.J. Super. 619, 677 A.2d 1188 (App. Div.), certification denied, 146 N.J. 568
    • (1996) Safer V. Estate of Pack
  • 63
    • 0242399338 scopus 로고    scopus 로고
    • An update on genetic risks and the duty to warn
    • Merz JF. 1999. An update on genetic risks and the duty to warn. PennBioethics 6:3-4
    • (1999) PennBioethics , vol.6 , pp. 3-4
    • Merz, J.F.1
  • 64
    • 0242651065 scopus 로고    scopus 로고
    • Genetic risks, confidentiality, and duty to warn
    • Merz JF, Sankar P. 1998. Genetic risks, confidentiality, and duty to warn. PennBioethics 5:1,4
    • (1998) PennBioethics , vol.5 , pp. 1
    • Merz, J.F.1    Sankar, P.2
  • 65
    • 0034627256 scopus 로고    scopus 로고
    • Family duty is more important than rights
    • Weijer C. 2000. Family duty is more important than rights. BMJ 321:1466
    • (2000) BMJ , vol.321 , pp. 1466
    • Weijer, C.1
  • 67
    • 0035383268 scopus 로고    scopus 로고
    • The family covenant and genetic testing
    • Doukas DJ, Berg JW. 2001. The family covenant and genetic testing. Am. J. Bioethics 1:2-10
    • (2001) Am. J. Bioethics , vol.1 , pp. 2-10
    • Doukas, D.J.1    Berg, J.W.2
  • 68
    • 0242651057 scopus 로고    scopus 로고
    • Genetic testing results: Who has a "right" to know?
    • 2002. Genetic testing results: Who has a "right" to know? Med. Ethics Advisor 18: 49-52
    • (2002) Med. Ethics Advisor , vol.18 , pp. 49-52
  • 69
    • 0032231930 scopus 로고    scopus 로고
    • Familial disclosure in defiance of nonconsent
    • Merz J, Cho M, Sankar P. 1998. Familial disclosure in defiance of nonconsent. Am. J. Hum. Genet. 63:898-900
    • (1998) Am. J. Hum. Genet. , vol.63 , pp. 898-900
    • Merz, J.1    Cho, M.2    Sankar, P.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.