Ownership of uncertainty: Healthcare professionals counseling and treating women from hereditary breast and ovarian cancer families who receive an inconclusive BRACA1/2 genetic test result

Genetic Testing and Molecular Biomarkers

Volumn 15, Issue 4, 2011, Pages 243-250

  Kenen, Regina ^a   Ardern Jones, Audrey ^b   Lynch, Elly ^b,c   Eeles, Rosalind ^b,d  

^a The College of New Jersey   (United States)

^b INSTITUTE OF CANCER RESEARCH   (United Kingdom)

^c AUSTIN HOSPITAL   (Australia)

^d INSTITUTE OF CANCER RESEARCH   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ARTICLE; BREAST CANCER; DECISION MAKING; FEMALE; GENETIC SCREENING; HEALTH CARE PERSONNEL; HEREDITY; HUMAN; OVARY CANCER; PROFESSIONAL PRACTICE; QUALITATIVE ANALYSIS; SEMI STRUCTURED INTERVIEW;

BREAST NEOPLASMS; FEMALE; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HEALTH PERSONNEL; HUMANS; INTERVIEWS AS TOPIC; OVARIAN NEOPLASMS; QUESTIONNAIRES; UNCERTAINTY;

EID: 79953094994     PISSN: 19450265     EISSN: 19450257     Source Type: Journal    
DOI: 10.1089/gtmb.2010.0071     Document Type: Article

References (47)

1. Ardern-Jones A, Kenen R, Lynch E, et al. (2010) Is no news good news? Inconclusive genetic test results in BRCA1 and BRCA/2 from patients and professionals' perspectives. Hered Cancer Clin Pract 8:1.
2. Armes JE, Venter DJ (2002) The pathology of inherited breast cancer. Pathology 34:309-314. (Pubitemid 34827990)
3. Armstrong K, Stopfer J, Calzone J, et al. (2002) What does my doctor think? Preferences for knowing the doctor's opinion among women considering clinical testing for BRCA1/21/21/2 mutations. Genet Test 6:115-118.
4. Aronowitz RA (2007) Unnatural History: Breast Cancer and American Society. Cambridge University Press, Cambridge.
5. Aronowitz RA (2009) The converged experience of risk and disease. Milbank Q 87:417-442.
6. Bailey C (2007) A Guide to Qualitative Field Research. Pine Forge Press, Thousand Oaks, CA.
7. Beck U (1992) Risk Society: Towards a New Modernity. Sage, London.
8. Beck-Gernsheim e (2000) Health and responsibility: from social change to technological change and vice versa. In: Adam B, Beck U, Van Loon J (eds) The Risk Society and Beyond: Critical Issues for Social Theory. Sage Publications, Thousand Oaks pp. 122-135.
9. Beeson D (1997) Nuance, complexity, and context: qualitative methods in genetic counselling research. J Genet Couns 6:21-43. (Pubitemid 127716865)
10. Breast Cancer Information Core (BIC) (2008) NHGRI research. nhgri.nih.gov/bic/.
11. Bubela TM, Caulfield TA (2004) Do the print media "hype" genetic research? A comparison of newspaper stories and peerreviewed research papers. Can Med Assoc J 170:1399-1407. (Pubitemid 38594632)
12. Campeau PM, Foulkes WD, Tischkowitz, MD (2008) Hereditary breast cancer: new genetic developments, new therapeutic avenues. Hum Genet 124:31-42.
13. Coulter A (1999) Paternalism or partnership? Patients Have grown up: and there's no going back. Br Med J 319:719-720.
14. Elwyn G, Gray J, Clarke A (2000) Shared decision making and non-directiveness in genetic counselling. Genet Test 37:135-138. (Pubitemid 30245899)
15. FORCE (Facing Our Risk of Cancer Empowered) (2005) www.facingourrisk.org.
16. Fox RC (1957) Training for Uncertainty. In: Merton R, Reader G, Kendall P (eds) The Student Physician. Harvard University Press, Cambridge, pp 204-241.
17. Geller G, Tambor ES, Chas GA (1993) Measuring physicians' tolerance for ambiguity and its relationship to their reported practices regarding genetic testing. Med Care 11:989-1001.
18. Ghosh A, Ghosh K (2005) Translating evidence-based information into effective risk communication: current challenges and opportunities. J Lab Clin Med 145:171-180. (Pubitemid 40692399)
19. Glaser B (1998) Doing Grounded Theory; Issues and Discussions. Sociology Press, Mill Valley, CA.
20. Glaser B, Strauss A (1967) The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine, Chicago.
21. Graeser M, Engel C, Rhiem K, et al. (2009) Contralateral breast cancer risk in BRCA1 and BRCA2 mutation carriers. J Clin Oncol 27:5887-5892.
22. Groopman J (2007) How Doctors Think? Houghton Mifflin, New York, pp 151-152.
23. Hunt R, Newman R (1997) Medical knowledge overload: a disturbing trend for physicians. Health Care Manage Rev 22:70-75. (Pubitemid 127457380)
24. Kenen R, Shapiro P, Friedman S, et al. (2007) Peer support in coping with medical uncertainty: discussion of oophorectomy and hormone replacement therapy on a web-based message board. Psychooncology 16:763-771. (Pubitemid 47249178)
25. Koh GC, Khoo HE, Wong ML, et al. (2008) The effects of problembased learning during medical school on physician competency: a systematic review. Can Med Assoc J 178:34-41.
26. Lakhani S, van de Vijver M, Jacquemier J, et al. (2002) For the breast cancer linkage consortium the pathology of familial breast cancer: predictive value of immunohistochemical markers estrogen receptor, progesterone receptor, HER-2 and P53 in patients with mutations in BRCA 1 and BRCA2. J Clin Oncol 20:2310-2318. (Pubitemid 34441658)
27. Mathieson CM, Stam HJ (1995) Renegotiating identity: cancer narratives. Sociol Health Illn 17:283-306.
28. McAllister M (2001) Grounded theory in genetic counselling research. J Genet Couns 10:233-250. (Pubitemid 33818209)
29. McAllister M, Payne K, Nicholls S, et al. (2008) Patient empowerment in clinical genetics services. J Health Psychol 13:895-905.
30. Moller P, Borg A, Evans DG, et al. (2002) Survival in prospectively ascertained familial breast cancer: analysis of a series stratified by tumor characteristics, BRCA1/2 mutations and oopherectomy. Int J Cancer 101:555-559.
31. Narod sa (2006) Review: modifiers of risk of hereditary breast cancer. Oncogene 25:5832-5836.
32. The National Women's Health Network (2005) 1413 K Street NW. Washington, DC (www.nwhn.org).
33. O'Neill SC, DeMarco T, Peshkin BN, et al. (2006) Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA 1/2 test results. Am J Med Genet Part C Semin Med Genet 142 C: 251-259. (Pubitemid 44747452)
34. Petersen A (2001) Biofantasies: genetics and medicine in the print news media. Soc Sci Med 52:1255-1268. (Pubitemid 32101450)
35. Poleti MC, Han PKJ, Col NF (2007) Communicating the uncertainty of harms and benefits of medical interventions. Med Decis Making 27:681-695. (Pubitemid 47547605)
36. Smith JA (1996) Evolving issues for qualitative psychology. In: Richardson JTE (ed) Handbook of Qualitative Research Methods. The British Psychological Society, Leicester, UK, pp 273-285.
37. Sowter H, Ashworth A (2005) BRCA1 and BRCA2 as ovarian cancer susceptibility genes. Carcinogenesis 10:1651-1656. (Pubitemid 41487980)
38. Strauss A, Corbin J (1990) Basics of qualitative Research: Gounded Theory Procedures and Techniques. Sage, Newbury Park.
39. Strauss A, Corbin J (1994) Grounded theory methodology in an overview. In: Denzin NK, Lincoln YS (eds) Handbook of Qualitative Research. Sage Publications, Thousand Oaks, CA, pp 273-285.
40. Swoboda DA (2008) Negotiating the diagnostic uncertainty of contested illnesses: physician practices and paradigms. Health (London) 12:453-478.
41. Tomes N (2007) Patient empowerment and the dilemmas of latemodern medicalisation. Lancet 369:698-700. (Pubitemid 46281316)
42. Travers C, Martin-Khan M, Lie D (2009) Barriers and enablers of health promotion, prevention and early intervention in primary care: evidence to inform the Australian national dementia strategy. Aust J Aging 28:51-57.
43. Turnbull C, Rahman N (2008) Genetic predisposition to breast cancer: past, present, and future. Annu Rev Genomics Hum Genet 9:321-345.
44. van Dijk S, Timmermans DRM, Meijers-Heijboer H, et al. (2006) Clinical characteristics affect the impact of an uninformative DNA test result: the course of worry and distress experienced by women who apply for genetic testing for breast cancer. J Clin Oncol 24:3672-3677. (Pubitemid 46630543)
45. Weber B, Nathanson K (2000) Low penetrance genes associated with increased risk for breast cancer. Eur J Cancer 36:1193-1199. (Pubitemid 30407005)
46. Zafar SY, Alexander SC, Weinfurt KP, et al. (2009) Decision making and quality of life in the treatment of cancer: a review. Support Care Cancer 2:117-127.
47. Zinn JO (ed) (2008) Social Theories of Risk and Uncertainty: An Introduction. Blackwell, Oxford, UK, p 220.