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. 2018 May 11;27(6):1459-1472.
doi: 10.1007/s10897-018-0261-5. Online ahead of print.

Patients' Views of Treatment-Focused Genetic Testing (TFGT): Some Lessons for the Mainstreaming of BRCA1 and BRCA2 Testing

Sarah Wright  1 , Mary Porteous  2 , Diane Stirling  2 , Julia Lawton  3 , Oliver Young  4 , Charlie Gourley  2   5 , Nina Hallowell  6
Affiliations

Patients' Views of Treatment-Focused Genetic Testing (TFGT): Some Lessons for the Mainstreaming of BRCA1 and BRCA2 Testing

Sarah Wright et al. J Genet Couns. .

Abstract

This paper explores patients' views and experiences of undergoing treatment-focused BRCA1 and BRCA2 genetic testing (TFGT), either offered following triaging to clinical genetics (breast cancer) or as part of a mainstreamed care pathway in oncology (ovarian cancer). Drawing on 26 in-depth interviews with patients with breast or ovarian cancer who had undergone TFGT, this retrospective study examines patients' views of genetic testing at this point in their care pathway, focusing on issues, such as initial response to the offer of testing, motivations for undergoing testing, and views on care pathways. Patients were amenable to the incorporation of TFGT at an early stage in their cancer care irrespective of (any) prior anticipation of having a genetic test or family history. While patients were glad to have been offered TFGT as part of their care, some questioned the logic of the test's timing in relation to their cancer treatment. Crucially, patients appeared unable to disentangle the treatment role of TFGT from its preventative function for self and other family members, suggesting that some may undergo TFGT to obtain information for others rather than for self.

Keywords: BRCA1 and BRCA2 testing; Breast/ovarian cancer; Clinical implementation; Mainstreaming; Patient experience; Treatment-focused genetic testing (TFGT).

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Conflict of interest statement

Conflict of Interest

Sarah Wright, Mary Porteous, Diane Stirling, Julia Lawton, Oliver Young, and Nina Hallowell declare that they have no conflict of interest.

Charlie Gourley has sat on advisory boards for AstraZeneca, Clovis, and Tesaro, has received lecture fees from AstraZeneca and Tesaro, and received research funding for clinical trials from AstraZeneca and Tesaro.

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.

Figures

Fig. 1
Fig. 1
Patients’ pathways to TFGT BRCA testing
See this image and copyright information in PMC

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