Genetic Secrets and the Family

Bell, Dean Phillip; Bennett, Belinda

doi:10.4324/9781315254517-8

Cited by 1 publication

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“…Previous studies have suggested that HBOC clients disclose genetic information from a sense of familial responsibility, enacting a kind of relational autonomy (D'Agincourt-Canning 2006;Hallowell et al 2003)-the active consideration of one's obligations and responsibilities to others when making personal autonomous decisions (Bell and Bennett 2001). Davey et al (2006) note that relational elements may already inform genetic counselor practice, in so far as genetic counselors routinely encourage their clients to disclose genetic information to their families (as supported by studies above), thereby promoting the client's relational autonomy.…”

Section: Introductionmentioning

confidence: 99%

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

Shepherd

Browne

Warwick

2016

Journal of Genetic Counseling

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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.

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