The genetic self: The human genome project, genetic counseling, and family therapy

Families, Systems and Health

Volumn 17, Issue 1, 1999, Pages 5-25

  Peters, June A ^{a,b,c,d,e,f,g}   Djurdjinovic, Luba ^a   Baker, Diane ^a,b,c  

^a UNIVERSITY OF PITTSBURGH GRADUATE SCHOOL OF PUBLIC HEALTH   (United States)

^b UNIVERSITY OF PITTSBURGH   (United States)

^c Genetic Counseling Program   (United States)

^d Ferre Institute   (United States)

^e SYRACUSE UNIVERSITY   (United States)

^f Graduate Program in Genetic Counseling   (United States)

^g UNIVERSITY OF MICHIGAN   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CANCER RISK; CRISIS INTERVENTION; FAMILY COUNSELING; FAMILY THERAPY; GENE MAPPING; GENETIC COUNSELING; POLICY; PRIMARY HEALTH CARE; PSYCHOSOCIAL CARE; PSYCHOTHERAPY; REVIEW;

EID: 0032946333     PISSN: 10917527     EISSN: None     Source Type: Journal    
DOI: 10.1037/h0089885     Document Type: Review

References (76)

1. Ad Hoc Committee of the American Society of Human Genetics (ASHG) (1975). Genetic counseling definition. American Journal of Human Genetics 27:240-242.
2. ASCO (1996) Statement of the American Society of Clinical Oncology: Genetic testing for cancer susceptibility. Journal of Clininical Oncology 14(5):1730-1736.
3. Baty, B.J., Benne, V.L., McDonald, J., Croyle, R.T., Halls, C., Nash, J.E., Botkin, J.R. (1997). BRCA1 testing: Genetic counseling protocol development and counseling issues. Journal of Genetic Counseling 6(2): 223-244.
4. Benkendorf, J.L., Callanan, N.P., Grobstein, R., Schmerler, S., Fitzgerald, K.T. (1992). An explication of the National Society of Genetic Counselors Code of Ethics. Journal of Genetic Counseling 1(1):31-40.
5. Bennett, R.L. Steinhaus, K.A., Uhrich, S.B., OïSullivan, C.K., Resta, R.G., lochner-Doyle, D, et al. (1995). Recommendations for standardized human pedigree nomenclature. American Journal of Human Genetics 56:745-752.
6. Biesecker, B.B., Boehnke, M., Calzone, K. Genetic counseling for families with inherited susceptibility to breast and ovarian cancer. Journal of the American Medical Association 269:1970-4.
7. Burns, J.K., Reiser, G.A. (1992). Continuing education in genetics for adoption workers in Wisconsin. Journal of Genetic Counseling 1(2):187-202.
8. Collins, F.C. (1997). Preparing health professionals for the genetic revolution. Journal of the American Medical Association 278(15):1285-1286.
9. Delp, K.J., Kaepernick, L.A. (1992). Genetics and adoption: Forming a partnership. Journal of Genetic Counseling 1(2):203-209
10. Dixson, B., Dang, V., Cleveland, J.O., Peterson, R.M. (1992). An education program to overcome language and cultural barriers to genetic services. Journal of Genetic Counseling 1(3):267-274.
11. Djurdjinovic, L. (1998). Psychosocial counseling. In Baker, D.L., Schuette, Uhlmann, W. (eds) Text in Genetic Counseling. New York, NY: John Wiley & Sons.
12. Djurdjinovic, L (1997) Generations lost: A psychological discussion of a cancer genetics case report. Journal of Genetic Counseling 6(2):177-180.
13. Durant, J., Hansen, A., Bauer, M. (1997) Public understanding of the new genetics. In Marteau, T., Richards, M. (eds.) The troubled helix: Social and psychological implications of the new human genetics. Cambridge, UK: Cambridge University Press.
14. Durfy, S., Peters, J.A. (1993). For the benefit of all: Case study and commentary on breast cancer susceptibility. Hastings Center Report, 25(5):28-30.
15. Eunpu, D.L. (1997). Systemically-based psychotherapeutic techniques in genetic counseling. Journal of Genetic Counseling 6(1):1-20.
16. Fanos, J. (1996). Sibling Loss. Mahwah, NJ: Lawrence Erlbaum Associates.
17. Fiddler, M.B., Fine, B.A., Baker, D.L., and ABGC Consensus Development Consortium. (1996). A case-based approach to the development of practice-based competencies for accreditation of and training in graduate programs in genetic counseling. Journal of Genetic Counseling 5(3):105-112.
18. Fine, B.A., Baker, D.L, Fiddler, M.B. (1996). Practice-based competencies for accreditation of and training in graduate programs in genetic counseling. Journal of Genetic Counseling 5(3): 113-122.
19. Fine, B.A. (1993). The evolution of nondirectiveness in genetic counseling and implications of the human genome project. In Bartels, D.M., LeRoy, B.S, Caplan, A.L. Prescribing our future: Ethical challenges in genetic counseling. New York, NY: Aldine de Gruyter.
20. Fraser, F.C. (1974) Genetic counseling. American Journal of Human Genetics 26:636-59.
21. Geller, G., Botkin, J.R., Green, M.J., Press, N., Biesecker, B.B., Wilfond, B., Grana, G., Daly, M.B., Schneider, K., Kahn, M.J.E. (1997) Genetic testing for susceptibility to adult-onset cancer: The process and content of informed consent. Journal of the American Medical Association 277(18):1467-74.
22. Green, J., Richards, M., Murton, F., Statham, H., Hallowell, N. (1997) Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. Journal of Genetic Counseling 6(1): 45-60.
23. Green, R.M., Thomas, A.M. (1997) Whose gene is it? A case discussion about familial conflict over genetic testing for breast cancer. Journal of Genetic Counseling. 6(2):245-254.
24. Greene-Simonsen, D., Peters, J.A.. (1992). A successful blending of genetic counseling and psychotherapy. Perspectives in Genetic Counseling. 14(2):5, 1992.
25. Hallowell, N., Statham, H., Murton, F., Green, J., Richards, M. (1997). "Talking about chance": The presentation of risk information during genetic counseling for breast and ovarian cancer. Journal of Genetic Counseling 6(3): 269-286.
26. Kelly P.T. (1992). Breast cancer risk analysis: A genetic epidemiology service for families. Journal of Genetic Counseling 1(2):155-168.
27. Kenen, R. (1980). Negotiations, superstitions, and the plight of individuals born with severe birth defects. Social Science and Medicine, 14A.
28. Kenen, R. (1994). Women and risk. In Hutner, F.C. (ed.) Our vision and values: Women shaping the 21st century. Westport, CT: Praeger.
29. Kenen, R. (1996) The at-risk health status and technology: A diagnostic invitation and the igiftî of knowing. Social Science and Medicine 42(11):1545-1553.
30. Kenen, R., & Smith, A.C.M. (1995) Genetic counseling for the next 25 years: Models for the future. Journal of Genetic Counseling 4(2):115-124.
31. Kenen, R., Smith, A.C.M., Watkins, C., ZuberPittore, C. (1997) To use or not to use?: Factors involved in decision-making regarding genetic counseling and prenatal diagnosis from the male partneris perspective. Journal of Genetic Counseling 6(4):443-4.
32. Kessler, S. (1979) Genetic Counseling: Psychological Dimensions. New York: Academic Press.
33. Kessler, S. (1997a). Psychological aspects of genetic counseling. VII. Thoughts on Directiveness. Journal of Genetic Counseling 1(1):9-18.
34. Kessler, S. (1997b). Psychological aspects of genetic counseling. IX. Teaching and counseling. Journal of Genetic Counseling 6(3):287-296.
35. Kohut, H. (1972) The Restoration of the Self. New Haven, CT: International University Press
36. Lerman, C., Lustbader, E., Rimer, B., Daly, M., Miller, S., Sands, C. (1994) Effects of individualized breast cancer risk counseling: a randomized trial. Journal of the National Cancer Institute 87:286-92.
37. Lynch, H.T., Lynch, P.M., Lynch, J.F. (1979). Genetic counseling and cancer. In S. Kessler. Genetic Counseling: Psychological Dimensions. New York: Academic Press, pp. 221-241.
38. Marks, J.H. (1993). The training of genetic counselors: Origins of a psychosocial model. In Bartels, D.M., LeRoy, B.S., Caplan, A.L. (eds.) Prescribing our future: Ethical challenges in genetic counseling. New York, NY: Aldine de Gruyter.
39. Matloff, E.T. (1997). Generations lost: A cancer genetics case report. Journal of Genetic Counseling. 6(2):169-172.
40. McDaniel, S.H., Hepworth, J., Doherty, W.J. (1992) Medical Family Therapy: A Biopsychosocial Approach to Families with Health Problems. New York, NY: Basic Books, Harper Collins.
41. McDaniel, S.H., Hepworth, J., Doherty, W.J. (1997). The shared emotional themes of illness. In McDaniel, S.H., Hepworth, J., Doherty, W.J. (eds.) The shared experience of illness: Stories of patients, families and their therapists. New York, NY: Basic Books, Harper Collins.
42. McGoldrick, M., Gerson, R. (1985). Genograms in Family Assessment. New York, NY: Norton.
43. McKinnon, W.C., Baty, B.J., Bennett, R.L., Magee, M., Neufeld-Kaiser, W.A., Peters, K.F., Sawyer, J.C., Schneider, K.A., and the Social Issues Committee of the National Society of Genetic Counselors (1997). Predisposition genetic testing for late-onset disorders in adults. Journal of the American Medical Association 278(15):1217-1220.
44. Michie S., Marteau, T. (1997) Genetic counseling. In Marteau T., Richards M. (eds.) The troubled helix: Social and psychological implications of the new human genetics. Cambridge, UK: Cambridge University Press.
45. Middelton, L.A., Peters, K.F., Helmbold, E.A. (1997). Genes and inheritance. Cancer Nursing. 20(2):129-151.
46. Miller JB, Stiver IP (1997) The Healing Connection. Boston, MA: Beacon Press.
47. Mulvihill, J.J., Safyer, A.W., Bening, J.K. (1982) Prevention in familial breast cancer: Counseling and prophylactic mastectomy. Preventive Medicine 11:500-511.
48. National Society of Genetic Counselors Code of Ethics. Journal of Genetic Counseling l(l):41-44.
49. Nelkin, D., Lindee, M.S. (1995). The DNA Mystique: The gene as cultural icon. New York, NY: W.H. Freeman & Co.
50. Offit, K. (1998). Clinical Cancer Genetics. New York, NY: Wiley-Liss.
51. Ota Wang, V. (1994). Cultural competency in genetic counseling. Journal of Genetic Counseling 3(4):267-278.
52. Palmer, C.G.S., Sainfort, F. (1993a). Toward a new conceptualization and operationalization of risk perception within the genetic counseling domain. Journal of Genetic Counseling 2(4): 275-294.
53. Palmer, S., Spencer, J., Kushnick, T., Wiley, J., Bowyer, S. (1993b) Follow-up survey of pregnancies with diagnoses of chromosomal abnormality. Journal of Genetic Counseling. 2(3):139-152.
54. Peters, J.A. (1994). Suicide prevention in the genetic counseling context. Journal of Genetic Counseling. 3(3):199-213.
55. Peters, J.A., Stopfer, J.E. (1996). The genetic counselor's role in familial cancer. Oncology 10(2):159-166.
56. Peters, J.A., Biesecker, B.B. (1997). Genetic counseling and hereditary cancer. Cancer (Supplement), 80(3):576-586.
57. Peters, K.F., Hadley, D.W. (1997). The human genome project. Cancer Nursing 20(l):62-75.
58. Peters-Brown, T. & Fry-Mehltreter, L. (1996). Genetic counseling for pregnant adolescents. Journal of Genetic Counseling 5(4):155-168.
59. Pollin, I., Kanaan, S.B. (1995). Medical Crisis Counseling: Short-term therapy for long-term illness. New York, NY: BasicBooks, HarperCollins Publishers.
60. Punales-Morejon, D., Rapp, R. (1993). Ethnocultural diversity and genetic counseling training: The challenge for a twenty-first century. Journal of Genetic Counseling 2(3):155-8.
61. Rauch, J.B., Plumridge, D. (1992) A project to strengthen linkages between genetic centers and child welfare services. Journal of Genetic Counsseling. 1(2): 169-186.
62. Resta, R.G. (1997). The historical perspective: Sheldon Reed and 50 years of genetic counseling. Journal of Genetic Counseling 6(4):375-377.
63. Richards, M. (1997) Families, kinship and genetics. In Marteau, T., Richards, M. (eds.) Tlie troubled helix: Social and psychological implications of the new human genetics. Cambridge, UK: Cambridge University Press.
64. Rolland, J.S. (1994). Families, Illness & Disability: An integrative treatment model. New York, NY: Basic Books, Harper Collins Publishers.
65. Royal, C.D., Headings, V.E., Molnar, E.T., Ampy, F.R. (1995) Resilience in siblings of children with sickle cell disease. Journal of Genetic Counseling 4(3):199-218.
66. Schneider, K.A. (1994). Counseling about cancer: Strategics for genetic counselors. Wallingford, PA: National Society of Genetic Counselors.
67. Schneider, K.A., Stopfer, J.E., Peters, J.A., Knell, E., Rosenthal, G. (1997) Complexities in cancer risk counseling: Presentation of three cases. Journal of Genetic Counseling 6(2):147-168.
68. Seligman, M., Darling, R.B. (1989). Ordinary families, special children: A systems approach to childhood disability. New York, NY: Guilford Press.
69. Shiloh, S. (1997) Decision-making in the context of genetic risk. In Marteau T., Richards M. (eds.) The troubled helix: Social and psychological implications of the new human genetics. Cambridge, UK: Cambridge University Press.
70. Smith, S.C., Warren, N.S., Misra, L. (1993). Minority recruitment into the genetic counseling profession. Journal of Genetic Counseling 2(3):171-182.
71. Turk D.C., Kerns R.D. (1985). Health Illness, and Families: A Life-span Perspective. New York: Wiley & Sons.
72. Weeks, G.R., Treat S. (1992) Couples in Treatment. New York: Brunner/Mazel.
73. Weil, J., Mittman, I. (1993) A teaching framework for cross-cultural genetic counseling. Journal of Genetic Counseling 2(3): 159-170.
74. Weiss, J.O., Mackta, J.S. (199G).Starting and Sustaining Genetic Support Groups. Baltimore, MD: Johns Hopkins University Press.
75. Wexler, N.S. (1979). Genetic Russian roulette: The experience of being "at risk" for Huntington disease. In Kessler, S. (ed.) Genetic counseling: Psychological dimensions. New York, NY: Academic Press.
76. Wilfond, B., Baker D. 1995. Genetic counseling, non-directiveness, and clients" values: Is what clients say what they mean? Journal of Clinical Ethics: summer: 180-182.