Genetic testing for hereditary cancer: Challenges to ethical care in rural and remote communities

HEC Forum

Volumn 16, Issue 4, 2004, Pages 222-233

  D'Agincourt Canning, Lori ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN; TAMOXIFEN;

BREAST CANCER; CANCER GROWTH; CANCER SURGERY; CHEMOPROPHYLAXIS; COLON CANCER; COMMUNITY; CONFIDENTIALITY; DISEASE SEVERITY; DOCTOR PATIENT RELATION; FAMILIAL CANCER; GENETIC ANALYSIS; GENETIC SUSCEPTIBILITY; HEALTH PRACTITIONER; HEALTH PROGRAM; HEALTH SERVICE; HUMAN; MALIGNANT NEOPLASTIC DISEASE; MEDICAL ETHICS; MOLECULAR GENETICS; MUTATION; OVARY CANCER; PREDICTION; PRIVACY; PROSTATE CANCER; REVIEW; RISK ASSESSMENT; RURAL AREA; SOCIAL ASPECT; WELLBEING; CANADA; ETHICS; GENETIC COUNSELING; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; HEALTH; HEALTH CARE AND PUBLIC HEALTH; HEALTH CARE DELIVERY; HEALTH CARE PLANNING; NEOPLASM; RURAL HEALTH CARE; STANDARD;

GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH;

CANADA; CONFIDENTIALITY; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HEALTH SERVICES ACCESSIBILITY; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MEDICALLY UNDERSERVED AREA; NEOPLASMS; NEOPLASTIC SYNDROMES, HEREDITARY; RURAL HEALTH; RURAL HEALTH SERVICES;

EID: 13844280411     PISSN: 09562737     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10730-005-2233-z     Document Type: Review

References (40)

1. Baird PA. Identification of genetic susceptibility to common diseases: The case for regulation. Perceptions in Biology and Medicine, 2002; 45(4): 516-524.
2. d'Agincourt-Canning L. Experiential knowledge, moral agency and genetic testing for hereditary breast/ovarian cancer. Unpublished Ph.D. Dissertation, University of British Columbia. 2003.
3. Cook AF, Hoas H, and Joyner JC. No secrets on Main Street: Challenges to ethically sound care in the rural setting. American Journal of Nursing, 2001; 101(8): 67-71.
4. Cook AF and Hoas H. Where the rubber hits the road: Implications for organizational and clinical ethics in rural healthcare settings. HEC Forum, 2000; 12(4): 331-340.
5. Glover G. Rural bioethical issues of the elderly: How do they differ from urban ones? Journal of Rural Health, 2001; 17(4): 332-335.
6. Kirby M. The health of Canadians - The federal role, volume two: Current trends and future challenges (Cat. No. YC17-372/102E-IN). Ottawa, ON, National Library of Canada; 1999. [On-line] Available: www.parl.gc.ca/37/1/parlbus/ commbus/senate/com-e/soci-e/rep-e/repja n01vol2-e.pdf.
7. Romanow R. Building on values: The future of health care in Canada (Cat. No. CP32-85/2002E-IN). Ottawa, ON, National Library of Canada; 2002. [On-line] Available: www. hc-sc.gc.ca/english/pdf/ romanow/pdfs/HCC_Final_Report.pdf.
8. Newman E, Hua M et al. Frequency of breast cancer attributable to BRAC1 in a population based series of American women. Journal of the American Medical Association, 1988; 279: 915-921.
9. Clauss E, Risch N, et al. Genetic analysis of breast cancer in the cancer and steroid human study. American Journal of Human Genetics, 1991; 48: 232-242.
10. Schneider K. Counseling about cancer: Strategies for genetic counseling. New York, Wiley-Liss, Inc.; 2002.
11. Miki Y, Swenson J, et al. A strong candidate for the breast and ovarian cancer gene. Science, 1994; 266: 66-71.
12. Wooster R, Bignell G, Lancaster J, et al. Identification of the breast cancer susceptibility gene, BRCA2. Nature, 1995; 378: 789-792.
13. Wooster R, Neuhausen S, et al. Localization of a breast cancer susceptibility gene, BRCA2, to chromosome 13q12-13. Science, 1994; 265: 2088-2090.
14. Easton D, Bishop D, et al. Genetic linkage analysis in familial breast and ovarian cancer: Results from 214 families. American Journal of Human Genetics, 1993; 52: 678-701.
15. Easton D, Narod S, Ford D et al. The genetic epidemiology of BRCA1. Lancet, 1994; 344: 761.
16. Ford D, Easton D, et al. Risks of cancer in BRCA1-mutation carriers. Lancet, 1994; 343: 692-695.
17. Struewing H, Hartge P, et al. The risk of cancer associated with specific mutations of BRCA1 and BRCA2 among Ashkenazi Jews. New England Journal of Medicine, 1997; 336: 1401-1408.
18. Easton D, Ford D and Bishop T. Breast and ovarian cancer incidence in BRCA1-mutations. American Journal of Human Genetics, 1995; 56: 265-271.
19. Muto M. Genetic predisposition testing. Taking the lead. Gynecologic Oncology, 1997; 67: 121-122.
20. Olopade, O. The human genome project and breast cancer. Women's Health Issues, 1997; 7: 209-213.
21. Ponder, B. Genetic testing for cancer risk. Science, 1997; 278: 1050-1054.
22. Foulkes W and Narod S. Cancers of the breast, ovary and uterus. In: Foulkes W and Hodgson S; eds. Inherited susceptibility to cancer: Clinical, predictive and ethical perspectives. Cambridge, Cambridge University Press; 1998: 201-233.
23. Cuckle, H. Screening for cancer in those at high risk as a result of genetic susceptibility. In: Foulkes W and Hodgson S; eds. Inherited susceptibility to cancer: Clinical, predictive and ethical perspectives. Cambridge, Cambridge University Press; 1998: 20-29.
24. Koenig B, Greely H et al. Genetic testing for BRCA1 and BRCA2: Recommendations of the Stanford program in genomics, ethics and society. Journal of Women's Health, 1998; 7: 531-545.
25. Berry RA. Genetic information and research: Emerging legal issues. HEC Forum, 2003; 50(1): 70-99.
26. Hartmann LC, Schaid DJ, Woods JE et al. Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. New England Journal of Medicine, 1999; 340(2): 77-84.
27. Meijers-Heijboer H, Van Geel B, Van Putten WLJ et al. Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. New England Journal of Medicine, 2001; 354(3): 159-164.
28. Hartmann LC, Sellers TA, Schaid DJ et al. Efficacy of bilateral prophylactic mastectomy in BRCA1 and BRCA2 gene mutation carriers. Journal of the National Cancer Institute, 2001; 93(21): 1633-1637.
29. Rebbeck TR, Lynch HT, Newhausen SL et al. Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. New England Journal of Medicine, 2002; 346(21): 1616-1622.
30. Burgess MM, Knoppers BM and Laberge C. Ethics and genetics in medicine. In: Singer PA; ed. Bioethics at the Bedside: A Clinician's Guide. Toronto, Canadian Medical Association; 1999: 79-87.
31. Knoppers BM; ed. Socio-ethical issues in human genetics. Quebec, Les Editions, Yvon Blais Inc; 1998.
32. McCloskey HJ. Privacy and the right to privacy. Philosophy, 1980; 55: 17-38.
33. Stranc L and Evans J. Issues relating to the implementation of genetic screening programs. In: Knoppers B; ed. Socio-Ethical Issues in Human Genetics. Quebec, Les Editions Yvon Blais Inc; 1998: 43-105.
34. Reiman, J. Privacy, intimacy and personhood, Philosophy and Public Affairs, 1976; 4: 26-44.
35. Henderson G. Research in Medical Ethics: Genetic Diagnosis. In: Sugarman H and Sulmasy D; eds. Methods in medical ethics. Washington, D.C., Georgetown University Press; 2001: 267-285.
36. Knoppers B and Godard B. Ethical and legal perspectives on inherited cancer susceptibility. In: Foulkes W and Hodgson S; eds. Inherited susceptibility to cancer: Clinical, predictive and ethical perspectives. Cambridge, Cambridge University Press; 1998: 30-45.
37. Sommerville A and English V. Genetic privacy: Orthodoxy or oxymoron. Journal of Medical Ethics, 1999; (25): 144-150.
38. Lemmens T and Bahamin P. Genetics in life, disability and additional health insurance in Canada: A comparative legal and ethical analysis. In: Knoppers BM; ed. Socio-ethical issues in human genetics. Quebec, Les Editions, Yvon Blais Inc; 1998: 107-275.
39. Nelkin D and Lindee MS. The DNA mystique: The gene as a cultural icon. New York, Freeman; 1995.
40. Roberts LW, Battaglia J, Smithpeter M et al. An office on Main Street: Health care dilemmas in small communities. Hastings Center Report, 1999; 29(4): 28-37.