Ownership of uncertainty: healthcare professionals counseling and treating women from hereditary breast and ovarian cancer families who receive an inconclusive BRCA1/2 genetic test result.
OBJECTIVE
The aim of this study was to understand more fully how healthcare professionals deal with the uncertainty intrinsic in counseling and treating women from hereditary breast/ovarian cancer families who receive inconclusive BRCA1/2 genetic test results (genetic tests that do not find a mutation to account for the family history).


METHODS
We conducted a small, qualitative, exploratory study using open-ended semistructured interviews of 12 geneticists, genetic counselor/nurses, oncologists, gynecologists, and breast surgeons at a major UK cancer center. We asked questions about how these professionals dealt with the large amount of uncertainty raised by an inconclusive result, how they communicated the uncertainty involved, their feelings about presenting medical management options based on information fraught with uncertainty, the role of the media, differences in perspectives by specialty, and personal feelings about the uncertainty.


RESULTS
Based on themes generated by the data, we proposed the concept "ownership of uncertainty" (sole, shared, diffused, normalized, transferred) to explain how the professionals in this study dealt with this high degree of uncertainty. A shared ownership of uncertainty was the dominant model during the presentation of information given by the professionals as part of their consultation with their patients. However, the final decision for management was left primarily to the woman seeking advice, even though several of the professionals reported feeling uneasy about this.


CONCLUSIONS
The concept "ownership of uncertainty" helps advance the understanding of how the healthcare professionals deal with the uncertainty intrinsic to an inconclusive BRCA1/2 genetic test result within the current social context.
Department of Sociology and Anthropology, The College of New Jersey, Ewing, New Jersey 08628, USA. kenen@tcnj.edu
Regina
R
Kenen
Audrey
A
Ardern-Jones
Elly
E
Lynch
Rosalind
R
Eeles
D001943:Breast Neoplasms / Q000235:genetics* / Q000628:therapy; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000379:methods* / Q000523:psychology; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D010051:Ovarian Neoplasms / Q000235:genetics / Q000628:therapy; D011795:Surveys and Questionnaires; D035501:Uncertainty
Oncogene. 2006 Sep 25;25(43):5832-6
16998497
Psychooncology. 2007 Aug;16(8):763-71
17230435
J Clin Oncol. 2006 Aug 1;24(22):3672-7
16877736
Carcinogenesis. 2005 Oct;26(10):1651-6
15917310
Annu Rev Genomics Hum Genet. 2008;9:321-45
18544032
J Genet Couns. 1997 Mar;6(1):21-43
11660391
Med Decis Making. 2007 Sep-Oct;27(5):681-95
17873256
Lancet. 2007 Feb 24;369(9562):698-700
17321316
J Med Genet. 2000 Feb;37(2):135-8
10662816
J Clin Oncol. 2009 Dec 10;27(35):5887-92
19858402
Health (London). 2008 Oct;12(4):453-78
18818275
Support Care Cancer. 2009 Feb;17(2):117-27
18802727
CMAJ. 2004 Apr 27;170(9):1399-407
15111473
Soc Sci Med. 2001 Apr;52(8):1255-68
11281408
Hum Genet. 2008 Aug;124(1):31-42
18575892
Med Care. 1993 Nov;31(11):989-1001
8231339
J Lab Clin Med. 2005 Apr;145(4):171-80
15962835
Genet Test. 2002 Summer;6(2):115-8
12215250
Australas J Ageing. 2009 Jun;28(2):51-7
19566797
Int J Cancer. 2002 Oct 20;101(6):555-9
12237897
J Health Psychol. 2008 Oct;13(7):895-905
18809640
BMJ. 1999 Sep 18;319(7212):719-20
10487980
Hered Cancer Clin Pract. 2010 Jan 12;8(1):1
20180951
J Clin Oncol. 2002 May 1;20(9):2310-8
11981002
Am J Med Genet C Semin Med Genet. 2006 Nov 15;142C(4):251-9
17024668
Eur J Cancer. 2000 Jun;36(10):1193-9
10882856
Milbank Q. 2009 Jun;87(2):417-42
19523124
Health Care Manage Rev. 1997 Winter;22(1):70-5
9058088
Pathology. 2002 Aug;34(4):309-14
12190286
CMAJ. 2008 Jan 1;178(1):34-41
18166729