Enhancing Family Communication About Genetics: Ethical and Professional Dilemmas
- PDF / 133,047 Bytes
- 6 Pages / 595.276 x 790.866 pts Page_size
- 6 Downloads / 176 Views
PROFESSIONAL ISSUES
Enhancing Family Communication About Genetics: Ethical and Professional Dilemmas Jan Hodgson & Clara Gaff
Received: 6 December 2011 / Accepted: 6 June 2012 / Published online: 26 July 2012 # National Society of Genetic Counselors, Inc. 2012
Abstract When a new genetic condition is diagnosed within a family, genetic counselors often describe a sense of responsibility towards other at risk family members to be appropriately informed about their status. Successful communication of genetic information in families is contingent on many factors. While a small number of probands directly state their intention not to inform their relatives, many who do intend to communicate this information appear to be unsuccessful for a wide range of reasons and may benefit from follow up support from a genetic counselor. Drawing on the reciprocal-engagement model (REM) of genetic counseling practice we explore how enhancing family communication about genetics raises a number of ethical and professional challenges for counselors—and describe how we resolved these. A subsequent manuscript will describe the counseling framework we have developed to enhance family communication about genetics. Keywords Family communication . Reciprical-engagement model of genetic counseling (REM)
Introduction Knowledge of the presence of an inherited condition in the family or the availability of genetic testing can enhance J. Hodgson (*) : C. Gaff Murdoch Childrens Research Institute, Melbourne, Victoria, Australia e-mail: [email protected] J. Hodgson Department of Paediatrics, University of Melbourne, Melbourne, Victoria, Australia C. Gaff Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia
informed decision making about health management and/ or reproductive options (Bower et al. 2002). Genetic counselors describe a feeling of responsibility towards the family of their patients, wishing to ensure that they are informed and aware of the implications of a new genetic diagnosis or test results for themselves (Andorno 2004; Dugan et al. 2003; Lucassen and Parker 2004). However, a combination of practical, ethical and medico-legal factors mean that family members are not usually contacted directly by genetic counselors, who commonly rely on the patient to convey the information (Forrest et al. 2010). Although genetics consultations usually include a discussion about informing family members (Forrest et al. 2007), a significant proportion of those who are at risk appear to remain uninformed e.g. (Costalas et al. 2003). In the literature, ‘non-disclosure’ is usually discussed in relation to a person who directly refuses to convey information to another family member, e.g. (Leung 2000). However, a prospective study has shown that genetic counselors are rarely told directly by a patient that they do not intend to pass genetic information on to another family member (Clarke et al. 2005). More commonly, patients seem to state an intention to communicate with ‘all’ family members, but in reality don’t do so (K
Data Loading...
