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. 2017 Feb;26(1):182-189.
doi: 10.1007/s10897-016-9996-z. Epub 2016 Jul 28.

Identifying Needs: a Qualitative Study of women's Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study

Mirjam Tonheim Augestad  1   2 , Hildegunn Høberg-Vetti  3   4 , Cathrine Bjorvatn  3   4   5 , Ragnhild Johanne Tveit Sekse  5   6
Affiliations

Identifying Needs: a Qualitative Study of women's Experiences Regarding Rapid Genetic Testing for Hereditary Breast and Ovarian Cancer in the DNA BONus Study

Mirjam Tonheim Augestad et al. J Genet Couns. 2017 Feb.

Abstract

Genetic testing for hereditary breast and ovarian cancer is increasingly being offered in newly diagnosed breast and ovarian cancer patients. This genetic information may influence treatment decisions. However, there are some concerns that genetic testing offered in an already vulnerable situation might be an extra burden to these women. The aim of this study was to explore the experiences of women who had been offered and accepted genetic testing when newly diagnosed with breast or ovarian cancer. Four semi-structured focus-group interviews were conducted with 17 women recruited from a Norwegian multicenter study. The material was condensed, and conventional qualitative analysis was used to identify patterns in the participants' descriptions. Three core themes were identified: 1) being "beside oneself" 2) altruism and ethical dilemmas 3) the need for support and counselling to assist the decision process. The present study indicates that women who are offered genetic testing when newly diagnosed with breast or ovarian cancer want a consultation with a health professional. Personalized support and counselling might empower women to improve their ability to manage and comprehend this overwhelming situation, and find meaning in this experience.

Keywords: BRCA 1/2; Genetic information; Newly-diagnosed breast and ovarian cancer; Personalized support and counselling; Rapid genetic testing.

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Conflict of interest statement

Compliance with Ethical StandardsConflict of InterestMirjam Tonheim Augestad, Hildegunn Høberg-Vetti, Cathrine Bjorvatn and Ragnhild J.T. Sekse declare that they have no conflicts of interest.Human Studies and Informed ConsentAll 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. Informed consent was obtained from all patients for being included in the study.

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