Skip to main content
Log in

Universal BRCA1/BRCA2 Testing for Ovarian Cancer Patients is Welcomed, but with Care: How Women and Staff Contextualize Experiences of Expanded Access

  • Original Research
  • Published:
Journal of Genetic Counseling


Decreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients’ and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives’ influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a ‘family affair’ and staff must acknowledge this.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others


  • Alcalá, H. E. (2014). Differential mental health impact of cancer across racial/ethnic groups: Findings from a population-based study in California. BMC Public Health, 14, 930–938.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ardern-jones, A., Kenen, R., & Eeles, R. (2005). Too much, too soon? Patients and health professionals’ views concerning the impact of genetic testing at the time of breast cancer diagnosis in women under the age of 40. European Journal of Cancer Care, 14(3), 272–281.

    Article  CAS  PubMed  Google Scholar 

  • Augestad, M. T., Høberg-Vetti, H., Bjorvatn, C., & Sekse, R. J. (2017). Identifying needs: A qualitative study of women’s experiences regarding rapid genetic testing for hereditary breast and ovarian cancer in the DNA BONus study. Journal of Genetic Counseling, 26(1), 182–189.

    Article  PubMed  Google Scholar 

  • D’Agincourt-Canning, L. (2006). Genetic testing for hereditary breast and ovarian cancer: Responsibility and choice. Qualitative Health Research, 16(1), 97–118.

    Article  PubMed  Google Scholar 

  • Domchek, S. M., Friebel, T. M., Singer, C. F., Evans, G., Lynch, H. T., Issacs, C., et al. (2010). Association of risk-reducing surgery in BRCA1 or BRCA2 mutation carriers with cancer risk and mortality. JAMA, 304(9), 967–975.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Faden, R. R., & Beauchamp, T. L. (1986). A history and theory of informed consent. Oxford: Oxford University Press.

    Google Scholar 

  • Foster, M. W., Royal, C. D., & Sharp, R. R. (2006). The routinisation of genomics and genetics: Implications for ethical practices. Journal of Medical Ethics, 32(11), 635–638.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Gelmon, K. A., Tischkowitz, M., Mackay, H., Swenerton, K., Robidoux, A., Tonkin, K., et al. (2011). Olaparib in patients with recurrent high-grade serous or poorly differentiated ovarian carcinoma or triple-negative breast cancer: A phase 2, multicentre, open-label, non-randomised study. Lancet Oncology, 12(9), 852–861.

    Article  CAS  PubMed  Google Scholar 

  • Giddens, A. (1987). Social theory and modern sociology. Stanford: Stanford University Press.

    Google Scholar 

  • Gleeson, M., Meiser, B., Barlow-Stewart, K., Trainer, A., Tucker, K, Watts, K., et al. (2013). Communication and information needs of women diagnosed with ovarian cancer regarding treatment-focused genetic testing. Oncology Nursing Forum, 40(3), 275–283.

    Article  PubMed  Google Scholar 

  • Hallowell, N., Foster, C., Eeles, R., Arden-Jones, A., Murday, V., & Watson, M. (2003). Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information. Journal of Medical Ethics, 29(2), 74–79.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Kauff, N. D., Domchek, S. M., Friebel, T. M., Robson, M. E., Lee, J., Garber, J. E., et al. (2008). Risk-reducing salpingo-oophorectomy for the prevention of BRCA1- and BRCA2-associated breast and gynecologic cancer: A multicenter, prospective study. Journal of Clinical Oncology, 26(8), 1331–1337.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kvale, S., & Brinkmann, S. (2009). InterViews: Learning the craft of qualitative research interviewing (2nd ed). London: Sage.

    Google Scholar 

  • Ledermann, J., Harter, P., Gourley, C., Friedlander, M., Vergote, I., Rustin, G., et al. (2012). Olaparib maintenance therapy in platinum-sensitive relapsed ovarian cancer. The New England Journal of Medicine, 366(15), 1382–1392.

    Article  CAS  PubMed  Google Scholar 

  • Ledermann, J., Harter, P., Gourley, C., Friedlander, M., Vergote, I., Rustin, G., et al. (2014). Olaparib maintenance therapy in patients with platinum-sensitive relapsed serous ovarian cancer: A preplanned retrospective analysis of outcomes by BRCA status in a randomised phase 2 trial. Lancet Oncology, 15(8), 852–861.

    Article  CAS  PubMed  Google Scholar 

  • Meiser, B., Gleeson, M., Kasparian, N., Barlow-Stewart, K., Ryan, M., Watts, K., et al. (2012). There is no decision to make: Experiences and attitudes toward treatment-focused genetic testing among women diagnosed with ovarian cancer. Gynecologic Oncology, 124(1), 153–157.

    Article  CAS  PubMed  Google Scholar 

  • Metcalfe, K. A., Fan, I., McLaughlin, J., Risch, H. A., Rosen, B., Murphy, J., et al. (2009). Uptake of clinical genetic testing for ovarian cancer in Ontario: A population-based study. Gynecologic Oncology, 112(1), 68–72.

    Article  PubMed  Google Scholar 

  • National Institute for Health and Care Excellence. (2016). Olaparib for maintenance treatment of relapsed, platinum-sensitive, BRCA mutation-positive ovarian, fallopian tube and peritoneal cancer after response to second-line or subsequent platinum-based chemotherapy. NICE technology appraisal guidance [TA381].

  • Pietkiewicz, I., & Smith, J. A. (2012). Praktyczny przewodnik interpretacyjnej analizy fenomenologicznej w badaniach jakościowych w psychologii. Czasopismo Psychologiczne, 18(2), 361–369.

    Google Scholar 

  • Plaskocinska, I., Shipman, H., Drummond, J., Thompson, E., Buchanan, V., Newcombe, B., et al. (2016). New paradigms for BRCA1/BRCA2 testing in women with ovarian cancer: Results of the genetic testing in epithelial ovarian cancer (GTEOC) study. Journal of Medical Genetics, 53(10), 655–661.

    Article  PubMed  PubMed Central  Google Scholar 

  • Rebbeck, T. R., Kauff, N. D., & Domchek, S. M. (2009). Meta-analysis of risk reduction estimates associated with risk-reducing salpingo-oophorectomy in BRCA1 or BRCA2 mutation carriers. Journal of the National Cancer Institute, 101(2), 80–87.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Rubin, H. J., & Rubin, I. S. (2005). Qualitative interviewing: The art of hearing data. Thousand Oaks: Sage.

    Book  Google Scholar 

  • Schlich Bakker, K. J., ten Kroode, H. F. J., Wárlám-Rodenhuis, C. C., Ausems, M. G., & van den Bout, J. (2009). Distress in couples approached for genetic counseling and BRCA1/2 testing during adjuvant radiotherapy. Psycho-Oncology, 18(9), 965–973.

    Article  PubMed  Google Scholar 

  • Schlich-Bakker, K. J., Wárlám-Rodenhuis, C., van Echtelt, J., van den Bout, J., Ausems, M. G., & ten Kroode, H. F. (2006). Short term psychological distress in patients actively approached for genetic counselling after diagnosis of breast cancer. European Journal of Cancer, 42(16), 2722–2728.

    Article  PubMed  Google Scholar 

  • Schlich-Bakker, K. J., Ausems, M. G., Schipper, M., ten Kroode, H. F., Wárlám-Rodenhuis, C. C., & van den Bout, J. (2008). BRCA1/2 mutation testing in breast cancer patients: A prospective study of the long-term psychological impact of approach during adjuvant radiotherapy. Breast Cancer Research and Treatment, 109(3), 507–514.

    Article  CAS  PubMed  Google Scholar 

  • Shinebourne, P. (2011). Interpretative phenomenological analysis. In N. Frost (Ed.), Qualitative Research Methods in Psychology: Combining core approaches (pp. 44–65). Maidenhead: Open University Press.

  • Smith, J. A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds.), Qualitative Health Psychology: Theories and methods. London: Sage.

    Google Scholar 

  • Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretive phenomenological analysis: Theory, method and research. London: Sage.

    Google Scholar 

  • Watts, S., Prescott, P., Mason, J., McLeod, N., & Lewith, G. (2015). Depression and anxiety in ovarian cancer: A systematic review and meta-analysis of prevalence rates. BMJ Open, 5, e007618. doi:10.1136/bmjopen-2015-007618.

    Article  PubMed  PubMed Central  Google Scholar 

  • Weavers, M. R., Aaronson, N. K., Verhoef, S., Bleiker, E. M. A., Hahn, D. E. E., Kuenen, M. A., et al. (2014). Impact of rapid genetic counselling and testing on the decision to undergo immediate or delayed prophylactic mastectomy in newly diagnosed breast cancer patients: Findings from a randomised controlled trial. British Journal of Cancer, 110(4), 1081–1087.

    Article  Google Scholar 

  • Weavers, M. R., Ausems, M., Verhoef, S., Bleiker, E. M., Hahn, D. E., Brouwer, T., et al. (2016). Does rapid genetic counseling and testing in newly diagnosed breast cancer patients cause additional psychosocial distress? Results from a randomized clinical trial. Genetics in Medicine, 18(2), 137–144.

    Article  Google Scholar 

  • Zhang, S., Royer, R., Li, S., McLaughlin, J. R., Rosen, B., Risch, H. A., et al. (2011). Frequencies of BRCA1 and BRCA2 mutations among 1,342 unselected patients with invasive ovarian cancer. Gynecologic Oncology, 121(2), 353–357.

    Article  CAS  PubMed  Google Scholar 

  • Zilliacus, E., Meiser, B., Gleeson, M., Watts, K., Tucker, K., Lobb, E. A., et al. (2012). Are we being overly cautious? A qualitative inquiry into the experiences and perceptions of treatment-focused germline BRCA genetic testing amongst women recently diagnosed with breast cancer. Supportive Care in Cancer, 20(11), 2949–2958.

    Article  CAS  PubMed  Google Scholar 

Download references


We would like to thank the patients and clinical staff who took part in this study. Members of the GTEOC Study Group: Inga Plaskocinska, James Drummond, Edward Thompson, Vanessa Buchanan, Barbara Newcombe, Charlotte Hodgkin, Elisa Barter, Paul Ridley, Rita Ng, Suzanne Miller, Adela Dann, Victoria Licence, Hayley Webb, Li Tee Tan, Margaret Daly, Sarah Ayers, Barnaby Rufford, Helena Earl, Christine Parkinson, Timothy Duncan, Mercedes Jimenez-Linan, Gurdeep S. Sagoo, Stephen Abbs and Paul Pharoah. We also thank two anonymous reviewers for their comments and suggestions.

*We would like to thank Alicja Doroszuk for her support in transcribing the data.

This work was supported by Target Ovarian Cancer grant number T005MT. Marc Tischkowitz was supported by funding from the European Union Seventh Framework Program (2007Y2013)/ European Research Council (Grant No. 310018).

Author information

Authors and Affiliations



Corresponding author

Correspondence to Hannah Shipman.

Ethics declarations

Conflict of Interest

Hannah Shipman, Samantha Flynn, Carey F MacDonald-Smith, James Brenton, Robin Crawford, Marc Tischkowitz and Nicholas J Hulbert-Williams declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Shipman, H., Flynn, S., MacDonald-Smith, C.F. et al. Universal BRCA1/BRCA2 Testing for Ovarian Cancer Patients is Welcomed, but with Care: How Women and Staff Contextualize Experiences of Expanded Access. J Genet Counsel 26, 1280–1291 (2017).

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: