DNA diagnosis and the emergence of cancer-genetic services in european health care

The Social Management of Genetic Engineering

Volumn , Issue , 2019, Pages 117-138

  Bourret, Pascale ^a   Koch, Lene ^b   Stemerding, Dirk ^c  

^a UNIVERSITÉ DE BOURGOGNE   (France)

^b UNIVERSITY OF COPENHAGEN   (Denmark)

^c UNIVERSITY OF TWENTE   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 33645774810     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.4324/9780429423499-7     Document Type: Chapter

References (83)

1. Armstrong, D. (1995) ‘The rise of surveillance medicine’, Sociology of Health and Illness, vol. 17, pp. 393-404.
2. Biesecker, B., et al. (1993) ‘Genetic counselling for families with inherited susceptibility to breast and ovarian cancer’, JAMA, vol. 269, pp. 1970-74.
3. Bodmer, W.F., et al. (1987) ‘Localization of the gene for familial adenomatous polyposis on chromosome 5', Nature, vol. 328, pp. 614-16.
4. Bourret, P., et al. (1997) ‘Questions sociales et sociologiques autour de Ton-cogénétique clinique’, in Y.J. Bignon (ed). Hérédité et Cancer, Lavoisier, Paris.
5. Bülow, S. and Myrhoj, T. (1996) ‘Arvelig kolorektal cancer’, Ugeskrifi for Loeger, vol 158, pp.2959.
6. Bülow, S. et al. (1990) ‘Familiser adenomatφs polypose’, Ugeskrifi for Loeger, vol. 152, pp. 2628-32.
7. Coghlan, A. (1996) ‘Hopelessness is key result of gene test’ New Scientist, vol. 152, (14 September), p. 8.
8. Collins, F.S. (1996) ‘BRCA1 -lots of mutations, lots of dilemmas’. New England Journal of Medicine, vol. 334, pp. 186-88.
9. Cotton, P. (1995) ‘Prognosis, diagnosis, or who knows? Time to learn what gene tests mean’, JAMA, vol. 273, pp. 93-95.
10. Danish Breast Cancer Cooperative Group (1996) Program for klinisk og genetisk radgivning vedfamiliar forekomst af cancer mammae, August.
11. Easton, D.F. et al.(1993) ‘Genetic linkage analysis in familial breast and ovarian cancer: results from 214 families’, Amican Journal of Human Genetics, vol. 52, pp. 678-701.
12. Eisinger, F., et al. (1995) ‘Refléxions sur I’organisation des consultations d’on-cogénétique (prèmiere étape vers la publication de bonnes pratiques cliniques)', Bulletin du Cancer, vol. 82, pp. 865-78.
13. Ejlertsen, B., et al. (1996) ‘Arvelig praedisposition til cancer mammae hos praemenopausale kvinder med primaer cancer mammae’, Retrospektiv etablering of en anonymiseret medicinsk biobank, April.
14. Fishei, R., et al. (1993) ‘The human mutator gene homolog MSH2 and its association with hereditary non polyposis colon cancer’ Cell, vol. 75, pp. 1027-38.
15. Friend, S.H. (1996) ‘Breast cancer susceptibility testing: realities in the post-gen omic era’, Nature Genetics, vol. 13, pp. 16-17.
16. Gezondheidsraad (1994) Genetische screening, Den Haag, The Netherlands.
17. Groden, J., et al. (1991) ‘Identification and characterization of the familial adenomatous polyposis coli gene’, Cell, vol. 66, pp. 589-600.
18. Grody, W.W. (1994) ‘The coming era of cancer genetic screening’, Diagnostic Molecular Pathology, vol. 3, pp. 145-146.
19. Hall, J.M., et al. (1990) ‘Linkage of early onset familial breast cancer to chromosome 17q21', Science, vol. 250, pp. 1684-89.
20. Harris, R. and Harris, H. (eds) (1995) Genetics in Primary Care, Workshop of EC Concerted Action on Genetics Services in Europe, Manchester Healthcare NHS Trust, Manchester, pp. 4-6.
21. Hoskins, K.F., et al. (1995) ‘Assessment and counseling for women with a family history of breast cancer: A guide for clinicians’, JAMA, vol. 273, pp. 577-85.
22. Houlston, R.S., et al. (1990) ‘Screening and genetic counselling for relatives of patients with colorectal cancer in a family cancer clinic’, British Medical Journal, vol. 301, pp. 366-68.
23. House of Commons Science and Technology Committee (1995) Human Genetics: The Science and its Consequences, vol. 1-4, HMSO, London.
24. Hubbard, R., Lewontin, R.C. (1996) ‘Pitfalls of genetic testing’, New England Journal of Medicine, vol. 334, pp. 1192-93.
25. Julian-Reynier C, et al. (1995) ‘Risk perception, anxiety and attitudes toward predictive testing after cancer genetic consulations’, American Journal of Human Genetics, vol. 57, p.296.
26. Julian-Reynier, C, et al. (1996) ‘L’émergence sociale des consultations de génétique pour I’adulte. Vers une colonisation génétique de la médecine?‘Sociologie et Societés, vol. 28, no. 2, pp. 141-55.
27. King M-C. (1992) Breast cancer genes: how many, where and who are they? Nature Genetics 2, 89-90.
28. King, M.C, et al. (1993) ‘Inherited breast and ovarian cancer: What are the risks? What are the choices?' JAMA, vol. 269, pp. 1975-80.
29. Kinzler, K.W., et al. (1991) ‘identification of FAP locus genes from chromosome 5q21" Science, vol. 253, pp. 661-665.
30. Klijn, J.G.M., et al. (1995) ‘Eerste Nederlandse ervaringen met een presympto-matische DNA-test bij familiair mamma-/ovariumcarcinoom’, Ned Tijdschr Geneeskd, vol. 139, pp. 439-45.
31. Koch, L. and Stemerding, D. (1994) ‘The sociology of entrenchment: a cystic fibrosis test for everyone?' Social Science & Medicine, vol. 39, pp. 1211-20.
32. Kommission für Offentlichkeitsarbeit ethische Fragen der Gesellschaft für Humangenetik (1995) ‘Stellungnahme zur Entdeckung der Brustkrebsgens BRCA1', Med. Genetik, vol. 7, pp. 8-10.
33. Leach, F.S., et al. (1993) ‘Mutations of a mut S homolog in hereditary non polyposis colorectal cancer’, Cell, vol. 75, pp. 1215-25.
34. Lindblom, A., et al. (1993) ‘Genetic mapping of a second locus predisposing to hereditary nonpolyposis colon cancer’, Nature Genet, vol. 5, pp. 279-82.
35. Lips, C.J.M., et al. (1994) ‘De ontdekking van genen verantwoordelijk voor erfelijke tumorsyndromen: klinische en maatschappelijke gevoigen’, Ned Tijdschr Geneeskd, vol. 138, pp. 60-63.
36. Lips, C.J.M., et al. (1982) ‘Genetic predisposition to cancer in man. Advantages and problems of central registration and screening of families at risk’, American Journal of Medicine, vol. 73, pp. 305-307.
37. Liu, B., et al. (1996) ‘Analysis of mismatch repair genes in hereditary nonpolyposis colorectal cancer patients’ Nature Medicine, vol. 2, pp. 169-74.
38. Lynch, H.T., et al. (1996) ‘Overview of natural history, pathology, molecular genetics and management of HNPCC (Lynch Syndrome). International Journal of Cancer, vol. 69, pp. 38-43.
39. Lynch, H.T. and Watson, P. (1992) ‘Genetic counselling and hereditary breast/ovarian cancer’, Lancet, vol. 339, p. 1181.
40. Marx, J. (1991) ‘Zeroing in on individual cancer risk’ Science, vol. 253, pp. 612-16.
41. Miki, Y., et al. (1994) ‘A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1', Science, vol. 266, pp. 66-71.
42. National Advisory Council for Human Genome Research (1994) ‘Statement on the use of DNA testing for presymptomatic identification of cancer risk’, JAMA, vol. 271, p. 785.
43. Nelson, N.J. (1996) ‘Caution guides genetic testing for hereditary cancer genes’, Journal of National Cancer Institute, vol. 88, pp. 70-72.
44. Netherlands Foundation (1993) ‘Netherlands Foundation for the Detection of Hereditary Tumours’, Annual Reports 1992 and 1993, University Hospital, Leiden.
45. Netherlands Foundation (1994) ‘Netherlands Foundation for the Detection of Hereditary Tumours’, Annual Report, University Hospital, Leiden.
46. Nicolaides, N.C., et al. (1994) ‘Mutations of two PMS homologues in hereditary nonpolyposis colon cancer’ Nature, vol. 371, pp. 75-80.
47. Niermeijer, M.F. (1995) ‘Medical genetics and primary care in The Netherlands’, in R. Harris and H. Harris (eds), Genetics in Primary Care, Workshop of EC Concerted Action on Genetics Services in Europe,, Manchester Healthcare NHS Trust, Manchester, PP. 15-18.
48. Nishisho, I., et al. (1991) ‘Mutations of chromosome 5q21 genes in FAP and colorectal cancer patients’, Science, vol. 253, PP. 665-69.
49. Nowak, R. (1994a) ‘Genetic testing set for takeoff, Science, vol. 265, pp. 464-467.
50. Nowak R. (1994b) Breast cancer gene offers surprises. Science, vol 265, pp 1796-99.
51. Nuffield Council of Bioethics (1995) Genetic screening and ethical issues, Nuffield Council, London.
52. Oosterwijk, J.C., et al. (1995a) ‘De kans op mammacarcinoom en samenhangende carcinomen bij een positieve familieanamnese’, Ned Tijdschr Geneeskd, vol. 139, pp. 423-28.
53. Oosterwijk, J.C., et al. (1995b) ‘Klonering van het eerste gen voor borst-/ovariumkanker (BRCA1), kartering van een tweede genlocus (BRCA2) en consequenties voor de klinische praktijk’, Ned Tijdschr Geneeskd, vol. 139, pp. 421-22.
54. Plummer, S.J. and Casey, G. (1966) ‘Are we any closer to genetic testing for common malignancies?', Nature Medicine, vol. 2, pp. 156-58.
55. Ponder, M. and Green, J.M. (1996) ‘BRCA1 testing: some issues in moving from research to service’, Psycho-oncology, vol. 5, pp. 223-32.
56. Rip, A. (1995) ‘Introduction of new technology: making use of recent insights from sociology and economics of technology’, Technology Analysis & Strategic Management, vol. 7, pp. 417-31.
57. Roberts, L. (1993) ‘Zeroing in on a breast cancer susceptibility gene’, Science, vol. 259, pp. 622-25.
58. Rosenau, P.V. (1994) ‘Cost consequences of the new gene technology for health policy’, International Journal of Technical Assessment in Health Care, vol. 10, pp. 546-61.
59. Shattuck-Eidens, D., et al. (1995) ‘A collaborative survey of 80 mutations in the BRCA1 breast and ovarian cancer susceptibility gene: Implications for presymptomatic testing and screening’, JAMA, vol. 273, pp. 535-41.
60. Smith, O. (1996) ‘Genetic testing: out of the bottle, Nature Medicine, vol. 2, pp. 613-14.
61. Sobol, H., et al. (1995) ‘Le groupe Genetique et Cancer de la FNCLCC. Les consultations d’oncogénétique en 1994, analyse d’activité: enquête sur 203 consulates’, in M. Boiron (ed), Ewocancer, vol. 95, John Libbey Eurotext, Paris, pp. 43-46.
62. Statement of ASCO (1996) ‘Statement of American Society of Clinical Oncology: genetic testing for cancer susceptibility” Journal of Clinical Oncology, vol.14, pp. 1730-36.
63. Stichting Opsporing Erfelijke Tumoren (Netherlands Foundation for the Detection of Hereditary Tumors) (1996), Richtlijnen voor beleid in families met erfelijke kanker, University Hospital, Leiden.
64. Svendsen, L.B., et al. (1992) ‘Hereditaer non polyposis kolorektal cancer’, Ugeskrifi for Laeger, vol. 154, pp. 917-20.
65. Thomas, G. (1995) ‘Dix ans de recherche sur les predispositions génétique au développement de tumeurs’, Medicine/Sciences, vol. 11, pp. 336-48.
66. Thomson, J.P.S. (1988) ‘Leeds Castle Polyposis Group meeting’, Dis Colon Rectum, vol. 31, pp. 613-16.
67. Tops, G.M.J., et al. (1989) ‘Presymptomatic diagnosis of familial adenomatous polyposis by bridging DNA markers’, Lancet, vol. 2, pp. 1361-63.
68. Vasen, H.F.A. et al. (1989) ‘Screening for hereditary nonpolyposis colorectal cancer: a study of 22 kindreds in The Netherlands’, American Journal of Medicine, vol. 86, pp. 278-81.
69. Vasen, H.F.A. and Devilee, P. (1993) ‘Periodiek onderzoek van families met een erfelijke predispositie voor mammacarcinoom’ Ned Tijdschr Geneeskd, vol. 137, pp. 2350-54.
70. Vasen, H.F.A., et al. (1990) ‘The value of screening and central registration of families with familial adenomatous polyposis: A study of 82 families in The Netherlands’, Dis Colon Rectum, vol. 33, pp. 227-30.
71. Vasen, H.F.A., et al. (1993) ‘Clinical heterogeneity of hereditary breast cancer and its impact on screening protocols: the Dutch experience on 24 families under surveillance’, European Journal of Cancer, vol. 29A, pp. 1111-14.
72. Vasen, H.F.A., et al. (1995) ‘Hereditary nonpolyposis colorectal cancer: results of long-term surveillance in 50 families’, European Journal of Cancer, vol. 31 A, pp. 1145-48.
73. Vasen, H.F.A., et al. (1996a) ‘Molecular genetic tests as a guide to surgical management of familial adenomatous polyposis’, Lancet vol. 348,433-35.
74. Vasen, H.F.A., et al. (1996b) ‘Cancer risk in families with hereditary nonpolyposis colorectal cancer diagnosed by mutation analysis’, Gastroenterology, vol. 110, pp. 1020-27.
75. Vasen, H.F.A., et al. (1988) ‘De waarde van screening en landelijke registratie van erfelijke tumoren’, Ned Tijdschr Geneeskd, vol. 132, pp. 1609-12.
76. Vasen, H.F.A., et al. (1991) ‘The international collaborative group on hereditary nonpolyposis colorectal cancer (ICG-HNPCC)', Dis Colon Rectum, vol. 34, pp. 424-25.
77. Vasen, H.F.A., et al. (1994) ‘The international collaborative group on HNPCC, Anticancer Research, vol. 14, pp. 1661-64.
78. Vasen, H.F.A., et al.(1994) ‘Screening for hereditary colorectal cancer’ Lancet, vol. 344, p. 877.
79. Vasen, H.F.A. and Miiller, H.J. (1991) ‘DNA-onderzoek in families met erfelijke vormen van kanker’, Ned Tijdschr Geneeskd, vol. 135, pp. 1620-23.
80. Wadman, M. (1996) ‘Panel softens cancer gene test warning’, Nature, vol. 380, p. 573.
81. Wooster, R., et al. (1994) ‘Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13ql2-I3', Science, vol. 265, pp. 2088-90.
82. Wooster, R., et al. (1995) ‘Identification of the breast cancer susceptibility gene BRCA2', Nature, vol. 378, pp. 789-92.
83. WHO (1995) Guidelines on ethical issues in medical genetics and the provision of genetic services (draft), World Health Organisation, Geneva.