title: A Relational Approach to Genetic Counseling for Hereditary Breast and Ovarian Cancer.
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.
authors.affiliation: Research School of Biology, Australian National University, Canberra, ACT, Australia. rowan.forbesshepherd@petermac.org.|Familial Cancer Centre, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia. rowan.forbesshepherd@petermac.org.|Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, VIC, Australia. rowan.forbesshepherd@petermac.org.
authors.forename: Rowan
authors.identifier: http://orcid.org/0000-0003-4510-0542
authors.initials: R
authors.lastname: Forbes Shepherd
authors.affiliation: Research School of Biology, Australian National University, Canberra, ACT, Australia. t.kayali.05@cantab.net.|Centre for Applied Philosophy and Public Ethics, Charles Sturt University, Canberra, ACT, Australia. t.kayali.05@cantab.net.
authors.forename: Tamara Kayali
authors.initials: TK
authors.lastname: Browne
authors.affiliation: ACT Genetic Service, ACT Health, Canberra, ACT, Australia.
authors.forename: Linda
authors.initials: L
authors.lastname: Warwick
mesh_terms: D000328:Adult; D001315:Australia; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology*; D030881:Disclosure; D005190:Family / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling / Q000379:methods*; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics / Q000523:psychology*; D036301:Qualitative Research
keywords: Disclosure; Ethical duty; Familial responsibility; Genetic counseling practice and theory; Genetic information; Relational approach