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Erschienen in: Journal of Genetic Counseling 2/2017

19.10.2016 | Original Research

A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer

verfasst von: Rowan Forbes Shepherd, Tamara Kayali Browne, Linda Warwick

Erschienen in: Journal of Genetic Counseling | Ausgabe 2/2017

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Abstract

Ethical issues arise for genetic counselors when a client fails to disclose a genetic diagnosis of hereditary disease to family: they must consider the rights of the individual client to privacy and confidentiality as well as the rights of the family to know their genetic risk. Although considerable work has addressed issues of non-disclosure from the client’s perspective, there is a lack of qualitative research into how genetic counselors address this issue in practice. In this study, a qualitative approach was taken to investigate whether genetic counselors in Australia use a relational approach to encourage the disclosure of genetic information from hereditary breast and ovarian cancer (HBOC) clients among family members; and if so, how they use it. Semi-structured qualitative interviews were conducted with 16 genetic counselors from selected states across Australia. Data collection and analysis were guided by a basic iterative approach incorporating a hybrid methodology to thematic analysis. The findings provide indicative evidence of genetic counselors employing a relational approach in three escalating stages––covert, overt and authoritative––to encourage the disclosure of genetic information. The findings lend credence to the notion that genetic counselors envision a form of relational autonomy for their clients in the context of sharing genetic information, and they depart from individualistic conceptions of care/solely client-centered counseling when addressing the needs of other family members to know their genetic status.
Fußnoten
1
Non-disclosure can be either active: when a client explicitly refuses to inform their relatives. This is considered rare in practice (Clarke et al. 2005; Gaff et al. 2010). Or passive: a client states they plan to tell “all” of their relatives but fails to do so for a variety of reasons (Gaff et al. 2005, 2010).
 
2
It is worth noting that client-centered counselling is a very Western concept. Other cultures are more family-centered, so the discussion throughout this paper may not be applicable to other cultures.
 
3
3/15 counselors did not raise familial implications for genetic testing within the interview. This, however, should not be viewed as an indication of how they feel regarding the familial implications of genetic testing.
 
4
When referring to implications for the health care of relatives, genetic counselors generally explore test results in the context of the proband and their pedigree, leading to the discussion on who the result is relevant to. This includes first, second and third degree relatives as appropriate.
 
5
The Masters courses were initiated as of 2008 (Sahhar et al. 2013), therefore more experienced practising genetic counselors in Australia have not undergone the specific training mentioned here. This may not be reflected in this sample, as 60 % of the sample consisted of Associate Genetic Counselors, meaning they had undergone the Masters course recently.
 
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Metadaten
Titel
A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer
verfasst von
Rowan Forbes Shepherd
Tamara Kayali Browne
Linda Warwick
Publikationsdatum
19.10.2016
Verlag
Springer US
Erschienen in
Journal of Genetic Counseling / Ausgabe 2/2017
Print ISSN: 1059-7700
Elektronische ISSN: 1573-3599
DOI
https://doi.org/10.1007/s10897-016-0022-2

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