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J Genet Couns. 2018 May 11. doi: 10.1007/s10897-018-0261-5. [Epub ahead of print]

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

Author information

1
Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Rm 3.734, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK. S.J.Wright@ed.ac.uk.
2
MRC Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh, UK.
3
Usher Institute of Population Health Sciences and Informatics, University of Edinburgh, Rm 3.734, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK.
4
Edinburgh Breast Unit, Western General Hospital, Edinburgh, UK.
5
Cancer Research UK Edinburgh Centre, MRC Institute of Genetics and Molecular Medicine, University of Edinburgh, Edinburgh, UK.
6
Big Data Institute, Ethox Centre, Wellcome Centre for Ethics and Humanities, Nuffield Department of Population Health, University of Oxford, Oxford, UK.

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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