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Everyone is unique: Dealing with diversity in genetic counselling

Mountain, Helen (2015) Everyone is unique: Dealing with diversity in genetic counselling. Masters by Research thesis, Murdoch University.

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The rapidly expanding volume and complexity of genetics knowledge, and an increasingly culturally diverse society, have led to changes in genetic counsellors’ roles. The profession continues to evolve from an information-giving medically based model to encompass a broader psycho-social perspective. This thesis examines how Australasian genetic counsellors engage with cultural diversity and their approach to working with culturally diverse clients, in particular those in consanguineous relationships.

The thesis research proceeded in three stages. In the first stage, 69 questionnaires were completed by people in consanguineous relationships who received genetic counselling. The questionnaire examined aspects of their relationship and their counselling experiences. The experiences of 16 participants were further explored through thematic analysis of qualitative interview transcripts. In the second stage, Australasian genetic counsellors’ views on consanguinity and cultural diversity were investigated through 58 postal questionnaires. The transcript of a discussion group with seven genetic counsellors was also reviewed using interpretive content analysis. In the third stage, the dialogue between genetic counsellors and clients was examined through audio-recordings of genetic counselling sessions and post-session questionnaires.

This research reveals that consanguineous couples had positive and negative relationship experiences. The majority were from backgrounds where this is an uncommon marriage form and experienced social isolation. Social pressures outweighed the increased genetic reproductive risks. The data reveals a shift in genetic counsellors’ engagement with cultural difference. Skills in managing diversity were evident, but barriers to application included continuing dominance of the educational model, lack of training and limited resources.

The research highlights challenges inherent in working with diversity. Developing skills and knowledge relevant to particular client groups is frequently suggested; this thesis argues that a model where all clients are recognised as unique individuals could be more effective. Recommendations for enhancing existing skills of genetic counsellors and facilitating bidirectional cultural dialogue are provided.

Publication Type: Thesis (Masters by Research)
Supervisor: Johnstone, Allan
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