Abstract for presentation at 11th International Congress of Human Genetics

Women's experiences of prenatal genetic counselling

  • Ms Jan Hodgson, Murdoch Children's Research Institute, Dept Paediatrics and Centre for Health and Society, Melbourne University, Victoria, Australia
  • Dr Lynn Gillam, Centre for Health and Society, Melbourne University, Victoria, Australia
  • Mrs Margaret Sahhar, Genetic Health Services Victoria and Dept Paediatrics, Melbourne University, Victoria, Australia
  • A/Prof Sylvia Metcalfe, Murdoch Children's Research Institute and Dept Paediatrics, Melbourne University, Victoria, Australia

    • Many pregnant women in Victoria have a Maternal Serum Screening test to indicate their individual risk of having a baby with a chromosome anomaly or neural tube defect. Approximately 5% receive an increased risk result and genetic counselling is generally offered to this group in order to ensure that women are able to make informed and autonomous choices about diagnostic procedures such as amniocentesis (Hodgson& Spriggs 2005).
    Little is known about what actually happens in prenatal genetic counselling sessions (Biesecker & Peters 2001), how women make their decisions or how they experience being at increased risk for fetal anomaly.
    As part of a PhD project, ‘Womens experiences of prenatal genetic counselling’, 21 increased risk genetic counselling sessions and 15 semi-structured follow up interviews (6 weeks later) were audio-taped, transcribed and analysed. Using rigorous qualitative methodology the transcripts were analysed for content, discourse and themes.
    The major findings from both the counselling sessions and the follow up interviews will be illustrated using direct quotes from the transcripts.
    Data from the counselling sessions demonstrated a wide variation in both counselling styles and information content. Many women knew before they attended genetic counselling whether or not they would have an amniocentesis and, rather than being ‘overwhelmed’ with information, would have liked more of an opportunity to explore the consequences of their choice with the counsellor. The implications for genetic counselling practice are discussed.

    Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counselling: peering into the black box. Am J Med Genet, 106(3), 191-198.
    Hodgson J & Spriggs M. (2005). A practical account of autonomy: Why genetic counselling is especially well suited to the facilitation of informed autonomous decision making. Journal of Genetic Counselling. Vol 14, No 2 pp. 89-97

    Conference Organiser - ICMS Pty Ltd