메뉴 건너뛰기




Volumn 23, Issue 6, 2008, Pages 707-727

'They had the right to know.' Genetic risk and perceptions of responsibility

Author keywords

Genetic decision making; Genetic responsibility; Genetic testing; Huntington disease; Moral obligation

Indexed keywords

ADULT; AGED; ARTICLE; ATTITUDE TO HEALTH; CANADA; ETHICS; FAMILY; FEMALE; GENETIC DECISION-MAKING; GENETIC PREDISPOSITION; GENETIC RESPONSIBILITY; GENETIC SCREENING; GENETICS; HUMAN; HUNTINGTON CHOREA; MALE; MIDDLE AGED; MORAL OBLIGATION; QUALITATIVE RESEARCH; SOCIAL BEHAVIOR; UTILIZATION REVIEW; YOUNG ADULT;

EID: 47249119193     PISSN: 08870446     EISSN: 14768321     Source Type: Journal    
DOI: 10.1080/14768320701235249     Document Type: Article
Times cited : (20)

References (48)
  • 2
    • 0031082775 scopus 로고    scopus 로고
    • Nuance, complexity, and context: Qualitative methods in genetic counseling research
    • Beeson, D. (1997). Nuance, complexity, and context: Qualitative methods in genetic counseling research. Journal of Genetic Counseling, 6, 21-43.
    • (1997) Journal of Genetic Counseling , vol.6 , pp. 21-43
    • Beeson, D.1
  • 3
    • 0032554222 scopus 로고    scopus 로고
    • The new genetics in clinical practice
    • Bell, J. (1998). The new genetics in clinical practice. British Medical Journal, 316, 618-620.
    • (1998) British Medical Journal , vol.316 , pp. 618-620
    • Bell, J.1
  • 4
    • 29744443746 scopus 로고    scopus 로고
    • A critical evaluation of the use of Interpretative Phenomenological Analysis (IPA) in health psychology
    • Brocki, J., & Wearden, A. (2006). A critical evaluation of the use of Interpretative Phenomenological Analysis (IPA) in health psychology. Psychology & Health, 21, 87-108.
    • (2006) Psychology & Health , vol.21 , pp. 87-108
    • Brocki, J.1    Wearden, A.2
  • 5
    • 0037607584 scopus 로고    scopus 로고
    • Ethical dilemmas in testing for late onset conditions: Reactions to testing and perceived impact on other family members
    • Chapman, E. (2002). Ethical dilemmas in testing for late onset conditions: Reactions to testing and perceived impact on other family members. Journal of Genetic Counseling, 11, 351-367.
    • (2002) Journal of Genetic Counseling , vol.11 , pp. 351-367
    • Chapman, E.1
  • 6
    • 0036129827 scopus 로고    scopus 로고
    • Interpretative phenomenological analysis and the new genetics
    • Chapman, E., & Smith, J. (2002). Interpretative phenomenological analysis and the new genetics. Journal of Health Psychology, 7, 125-130.
    • (2002) Journal of Health Psychology , vol.7 , pp. 125-130
    • Chapman, E.1    Smith, J.2
  • 7
    • 0033922967 scopus 로고    scopus 로고
    • Patient motivation, satisfaction and coping in genetic counseling and testing for BRCA1 and BRCA2
    • Clark, S., Bluman, L., Borstelmann, N., Regan, K., Winer, E., Rimer, B., et al. (2000). Patient motivation, satisfaction and coping in genetic counseling and testing for BRCA1 and BRCA2. Journal of Genetic Counseling, 9, 219-235.
    • (2000) Journal of Genetic Counseling , vol.9 , pp. 219-235
    • Clark, S.1    Bluman, L.2    Borstelmann, N.3    Regan, K.4    Winer, E.5    Rimer, B.6
  • 9
    • 0028022712 scopus 로고
    • Psychological costs and benefits of predictive testing for Huntington's disease
    • Codori, A., & Brandt, J. (1994). Psychological costs and benefits of predictive testing for Huntington's disease. American Journal of Medical Genetics, 54, 174-184.
    • (1994) American Journal of Medical Genetics , vol.54 , pp. 174-184
    • Codori, A.1    Brandt, J.2
  • 11
    • 3943063596 scopus 로고    scopus 로고
    • Stories in decisions: How at-risk individuals decide to request predictive testing for Huntington disease
    • Cox, S. (2003). Stories in decisions: How at-risk individuals decide to request predictive testing for Huntington disease. Qualitative Sociology, 26, 257-280.
    • (2003) Qualitative Sociology , vol.26 , pp. 257-280
    • Cox, S.1
  • 12
    • 0034997291 scopus 로고    scopus 로고
    • Experiences of genetic risk: Disclosure and the gendering of responsibility
    • d'Agincourt-Canning, L. (2001). Experiences of genetic risk: Disclosure and the gendering of responsibility. Bioethics, 15, 231-247.
    • (2001) Bioethics , vol.15 , pp. 231-247
    • d'Agincourt-Canning, L.1
  • 13
    • 30344445067 scopus 로고    scopus 로고
    • Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice
    • d'Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice. Qualitative Health Research, 16, 97-118.
    • (2006) Qualitative Health Research , vol.16 , pp. 97-118
    • d'Agincourt-Canning, L.1
  • 16
    • 21344461203 scopus 로고    scopus 로고
    • Negotiating responsibility: Case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease
    • Downing, C. (2005). Negotiating responsibility: Case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease. Journal of Genetic Counseling, 14, 219-234.
    • (2005) Journal of Genetic Counseling , vol.14 , pp. 219-234
    • Downing, C.1
  • 17
    • 33645354566 scopus 로고    scopus 로고
    • Genetic testing for Huntington disease - How is the decision taken?
    • Etchegary, H. (2006). Genetic testing for Huntington disease - How is the decision taken? Genetic Testing, 10, 60-67.
    • (2006) Genetic Testing , vol.10 , pp. 60-67
    • Etchegary, H.1
  • 19
    • 0036327263 scopus 로고    scopus 로고
    • Genetic testing for breast and ovarian cancer predisposition: Cancer burden and responsibility
    • Foster, C., Watson, M., Moyhnihan, C., Ardern-Jones, A., & Eeles, R. (2002). Genetic testing for breast and ovarian cancer predisposition: Cancer burden and responsibility. Journal of Health Psychology, 7, 469-484.
    • (2002) Journal of Health Psychology , vol.7 , pp. 469-484
    • Foster, C.1    Watson, M.2    Moyhnihan, C.3    Ardern-Jones, A.4    Eeles, R.5
  • 20
    • 0141745418 scopus 로고    scopus 로고
    • Disturbing notions of chronic illness and individual responsibility: Towards a genealogy of morals
    • Galvin, R. (2002). Disturbing notions of chronic illness and individual responsibility: Towards a genealogy of morals. Health, 6, 10-137.
    • (2002) Health , vol.6 , pp. 10-137
    • Galvin, R.1
  • 21
    • 0033181470 scopus 로고    scopus 로고
    • Doing the right thing: Genetic risk and responsibility
    • Hallowell, N. (1999). Doing the right thing: Genetic risk and responsibility. Sociology of Health & Illness, 21,597-621.
    • (1999) Sociology of Health & Illness , vol.21 , pp. 597-621
    • Hallowell, N.1
  • 22
    • 0034785677 scopus 로고    scopus 로고
    • Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy
    • Hallowell, N., Jacobs, I., Richards, M., Mackay, J., & Gore, M. (2001). Surveillance or surgery? A description of the factors that influence high risk premenopausal women's decisions about prophylactic oophorectomy. Journal of Medical Genetics, 38, 683-691.
    • (2001) Journal of Medical Genetics , vol.38 , pp. 683-691
    • Hallowell, N.1    Jacobs, I.2    Richards, M.3    Mackay, J.4    Gore, M.5
  • 23
    • 2442521134 scopus 로고    scopus 로고
    • Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer
    • Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., & Watson, M. (2004). Accommodating risk: Responses to BRCA1/2 genetic testing of women who have had cancer. Social Science & Medicine, 59, 553-565.
    • (2004) Social Science & Medicine , vol.59 , pp. 553-565
    • Hallowell, N.1    Foster, C.2    Eeles, R.3    Ardern-Jones, A.4    Watson, M.5
  • 24
  • 27
    • 0009877958 scopus 로고
    • The human genome project: Creator of the potentially sick, potentially vulnerable and potentially stigmatized?
    • I. Robinson Ed, London: Manchester University Press
    • Kenea, R. (1994). The human genome project: Creator of the potentially sick, potentially vulnerable and potentially stigmatized? In I. Robinson (Ed), Life and death under high technology medicine (pp. 49-64). London: Manchester University Press.
    • (1994) Life and death under high technology medicine , pp. 49-64
    • Kenea, R.1
  • 29
    • 0034097460 scopus 로고    scopus 로고
    • Assessing quality in qualitative research
    • Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. British Medical Journal, 320, 50-52.
    • (2000) British Medical Journal , vol.320 , pp. 50-52
    • Mays, N.1    Pope, C.2
  • 30
    • 0040443914 scopus 로고    scopus 로고
    • Genetic risk and the birth of the somatic individual
    • Novas, C., & Rose, N. (2000). Genetic risk and the birth of the somatic individual. Economy & Society, 29, 485-513.
    • (2000) Economy & Society , vol.29 , pp. 485-513
    • Novas, C.1    Rose, N.2
  • 31
    • 0003628081 scopus 로고
    • Available at
    • Nuffield Council on Bioethics. (1993). Genetic screening: Ethical issues. Available at http://www.nuffieldbioethics.org
    • (1993) Genetic screening: Ethical issues
  • 33
    • 0029007707 scopus 로고
    • Exploration of the effects of predictive testing for Huntington disease on intimate relationships
    • Quaid, K., & Wesson, M. (1995). Exploration of the effects of predictive testing for Huntington disease on intimate relationships. American Journal of Medical Genetics, 57, 46-51.
    • (1995) American Journal of Medical Genetics , vol.57 , pp. 46-51
    • Quaid, K.1    Wesson, M.2
  • 34
    • 0038279865 scopus 로고    scopus 로고
    • Attitudes towards genetic screening for predisposition to colon cancer among cancer patients, their relatives and members of the community
    • Ramsey, S., Wilson, S., Spencer, A., Geidzinska, A., & Newcomb, P. (2003). Attitudes towards genetic screening for predisposition to colon cancer among cancer patients, their relatives and members of the community. Community Genetics, 6, 29-36.
    • (2003) Community Genetics , vol.6 , pp. 29-36
    • Ramsey, S.1    Wilson, S.2    Spencer, A.3    Geidzinska, A.4    Newcomb, P.5
  • 36
    • 0032015961 scopus 로고    scopus 로고
    • Annotation: Genetic research, family life and clinical practice
    • Richards, M. (1998). Annotation: Genetic research, family life and clinical practice. Journal of Child Psychology Q? Psychiatry, 39, 291-305.
    • (1998) Journal of Child Psychology Q? Psychiatry , vol.39 , pp. 291-305
    • Richards, M.1
  • 37
    • 1842429080 scopus 로고    scopus 로고
    • Couples' experiences of predictive testing and living with the risk or reality of Huntington disease: A qualitative study
    • Richards, F. (2004). Couples' experiences of predictive testing and living with the risk or reality of Huntington disease: A qualitative study. American Journal of Medical Genetics, 126A, 170-182.
    • (2004) American Journal of Medical Genetics , vol.126 A , pp. 170-182
    • Richards, F.1
  • 38
    • 1842429088 scopus 로고    scopus 로고
    • Impact on couple relationships of predictive testing for Huntington disease: A longitudinal study
    • Richards, F., & Williams, K. (2004). Impact on couple relationships of predictive testing for Huntington disease: A longitudinal study. American Journal of Medical Genetics, 126A, 161-169.
    • (2004) American Journal of Medical Genetics , vol.126 A , pp. 161-169
    • Richards, F.1    Williams, K.2
  • 40
    • 0031584044 scopus 로고    scopus 로고
    • Using research to develop care for patients with Huntington's disease
    • Skirton, H., & Glendinning, N. (1997). Using research to develop care for patients with Huntington's disease. British Journal of Nursing, 6, 83-90.
    • (1997) British Journal of Nursing , vol.6 , pp. 83-90
    • Skirton, H.1    Glendinning, N.2
  • 41
    • 85075290880 scopus 로고    scopus 로고
    • Interpretative phenomenological analysis and the psychology of health and illness
    • L. Yardley Ed, London: Routledge
    • Smith, J. A., Flowers, P., & Osborn, M. (1997). Interpretative phenomenological analysis and the psychology of health and illness. In L. Yardley (Ed), Material discourses of health and illness (pp. 68-91). London: Routledge.
    • (1997) Material discourses of health and illness , pp. 68-91
    • Smith, J.A.1    Flowers, P.2    Osborn, M.3
  • 42
    • 0000531578 scopus 로고    scopus 로고
    • Doing interpretative phenomenological analysis
    • M. Murray & K. Chamberlain Eds, London: Sage
    • Smith, J. A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds), Qualitative health psychology: Theories and methods (pp. 218-240). London: Sage.
    • (1999) Qualitative health psychology: Theories and methods , pp. 218-240
    • Smith, J.A.1    Jarman, M.2    Osborn, M.3
  • 43
    • 0033989352 scopus 로고    scopus 로고
    • Impact of genetic testing for Huntington disease on the family system
    • Sobel, S., & Cowan, D. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90, 49-59.
    • (2000) American Journal of Medical Genetics , vol.90 , pp. 49-59
    • Sobel, S.1    Cowan, D.2
  • 45
    • 0142186776 scopus 로고    scopus 로고
    • Predictive genetic test decisions for Huntington's disease: Context, appraisal and new moral imperatives
    • Taylor, S. (2004). Predictive genetic test decisions for Huntington's disease: Context, appraisal and new moral imperatives. Social Science & Medicine, 58, 137-149.
    • (2004) Social Science & Medicine , vol.58 , pp. 137-149
    • Taylor, S.1
  • 46
    • 0030636102 scopus 로고    scopus 로고
    • Three year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners
    • Tibben, A., Timman, R., Bannink, E. C., & Duivenvoorden, H. J. (1997). Three year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psychology, 16, 20-35.
    • (1997) Health Psychology , vol.16 , pp. 20-35
    • Tibben, A.1    Timman, R.2    Bannink, E.C.3    Duivenvoorden, H.J.4
  • 47
    • 0027537895 scopus 로고
    • Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program
    • Tibben, A., Frets, P., van de Kamp, J., Niermeijer, M., Vegter-van der Vlis, M., Roos, R., et al. (1993). Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program. American Journal of Medical Genetics, 48, 10-16.
    • (1993) American Journal of Medical Genetics , vol.48 , pp. 10-16
    • Tibben, A.1    Frets, P.2    van de Kamp, J.3    Niermeijer, M.4    Vegter-van der Vlis, M.5    Roos, R.6
  • 48
    • 26044442224 scopus 로고    scopus 로고
    • Factors influencing uptake of genetic testing for colorectal cancer risk in an Australian Jewish population
    • Warner, B., Curnow, L., Polglase, A., & Debinski, H. (2006). Factors influencing uptake of genetic testing for colorectal cancer risk in an Australian Jewish population. Journal of Genetic Counseling, 14, 387-394.
    • (2006) Journal of Genetic Counseling , vol.14 , pp. 387-394
    • Warner, B.1    Curnow, L.2    Polglase, A.3    Debinski, H.4


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.