Lack of familiarity with genetic testing among patients in Ireland with Cancer

William J Mullally 1, Fergus Keane 2, Amy Nolan 2, Liam Grogan 2, Oscar S Breathnach 2, Bryan T Hennessy 2, Dearbhaile C Collins 3, Patrick G Morris 2

Affiliations

PMID: 32813148
DOI: 10.1007/s11845-020-02333-0

Abstract

Background: Cancer gene panel testing is available in Ireland. The need for a clear strategy to deal with patient information generated from tumour genomic testing is recognised as a challenge in the National Cancer Strategy. However, the public's attitude and opinions regarding these results is not known in Ireland.

Aims: This prospective questionnaire study assessed the knowledge and opinions of patients in a national oncology centre, surrounding cancer gene panel testing.

Methods: An anonymised modified validated questionnaire was completed by volunteering patients in the medical oncology department. It comprised 14 questions which assessed patient's familiarity, intention, benefits and concerns associated with tumour genetic testing using a four-point Likert scale. Patients recorded their primary cancer diagnosis and family cancer history.

Results: Eighty-four patients completed the questionnaire with 77 (92%) patients declaring their primary cancer diagnosis. The median age was 56 (range 26 to 83) years. Overall, 42% (n = 35) of oncology patients were familiar/somewhat familiar with testing and 90% (n = 76) stated they would avail of genetic testing if available. Patients with breast cancer were no more likely to avail of genetic testing when compared with the non-breast cancer cohort (n = 21 vs. 56, p = 0.58) though they identified concerns with potential discrimination.

Conclusion: This is the first prospective Irish study to assess opinions surrounding cancer gene results. Addressing patient's lack of information as regards genetic testing is the first step in establishing a national cancer genetics testing programme in Ireland.

Keywords: Expectations; Genetic literacy; Genetic testing; Irish National Cancer Strategy; Patient attitudes.