Journal of Genetic Counseling

, Volume 26, Issue 6, pp 1280–1291 | Cite as

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

  • Hannah Shipman
  • Samantha Flynn
  • Carey F MacDonald-Smith
  • James Brenton
  • Robin Crawford
  • Marc Tischkowitz
  • on behalf of the GTEOC Study Group
  • Nicholas J Hulbert-Williams
Original Research

Abstract

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.

Keywords

UK BRCA1 BRCA2 Genetic counseling Interpretive phenomenological analysis (IPA) Ovarian cancer Oncology 

Notes

Acknowledgements

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).

Compliance with Ethical Standards

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.

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Copyright information

© National Society of Genetic Counselors, Inc. 2017

Authors and Affiliations

  • Hannah Shipman
    • 1
    • 2
  • Samantha Flynn
    • 3
  • Carey F MacDonald-Smith
    • 3
    • 4
  • James Brenton
    • 5
    • 6
  • Robin Crawford
    • 5
  • Marc Tischkowitz
    • 1
    • 7
  • on behalf of the GTEOC Study Group
  • Nicholas J Hulbert-Williams
    • 3
  1. 1.Department of Medical Genetics and National Institute for Health Research Cambridge Biomedical Research CentreUniversity of CambridgeCambridgeUK
  2. 2.School of EnglishThe University of Hong KongHong KongChina
  3. 3.Chester Research Unit for the Psychology of Health (CRUPH), Department of PsychologyUniversity of ChesterChesterUK
  4. 4.North Wales Cancer Treatment CentreGlan Clwyd HospitalNorth WalesUK
  5. 5.Cancer ServicesCambridge University Hospitals NHS Foundation TrustCambridgeUK
  6. 6.Cancer Research UK Cambridge Research InstituteCambridgeUK
  7. 7.East Anglian Medical Genetics ServiceCambridge University Hospitals NHS Foundation TrustCambridgeUK

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