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“Testing Times, Challenging Choices”: An Australian Study of Prenatal Genetic Counseling

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  • Published:
Journal of Genetic Counseling

Abstract

In many countries pregnant women deemed to be at increased risk for fetal anomaly following a screening test may attend a genetic counseling session to receive information and support in decision-making about subsequent diagnostic testing. This paper presents findings from an Australian study that explored 21 prenatal genetic counseling sessions conducted by five different genetic counselors. All were attended by pregnant women who had received an increased risk result from a maternal serum screening (MSS) test and who were offered a diagnostic test. Qualitative methods were used to analyze the content and structure of sessions and explore the counseling interactions. Findings from this cohort demonstrate that, within these prenatal genetic counseling sessions, counselor dialogue predominated. Overall the sessions were characterized by: a) an emphasis on information-giving b) a lack of dialogue about relevant sensitive topics such as disability and abortion. Arguably, this resulted in missed opportunities for client deliberation and informed decision-making. These findings have implications for the training and practice of genetic counselors and all healthcare professionals who communicate with women about prenatal testing.

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Acknowledgements

JH would like to convey her most grateful thanks to all of the prenatal genetic counselors involved and acknowledge their generosity in allowing interpretation of their interactions and their continuing support in disseminating these findings. JH would also like to acknowledge the Cooperative Research Centre for the Discovery of Genes for Common Human Diseases (Gene CRC) in Melbourne who provided funding for her PhD candidature and A/Professor Clara Gaff for her comments on this manuscript. Particular thanks are due to the 21 pregnant women who so kindly participated in this research at an obviously challenging time.

This study was completed in partial fulfillment of the requirement for the first author’s Doctoral degree from the University of Melbourne.

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Authors and Affiliations

  1. Genetic Education and Health Research, Murdoch Childrens Research Institute, Royal Children’s Hospital, Victoria, 3052, Australia

    Jan M. Hodgson & Sylvia A. Metcalfe

  2. Department of Paediatrics, University of Melbourne, Victoria, 3052, Australia

    Jan M. Hodgson, Margaret A. Sahhar & Sylvia A. Metcalfe

  3. Centre for Health and Society. School of Population Health, University of Melbourne, Victoria, 3010, Australia

    Lynn H. Gillam

  4. Children’s Bioethics Centre. Royal Children’s Hospital, Murdoch Childrens Research Institute, Victoria, 3052, Australia

    Lynn H. Gillam

  5. Genetic Health Services Victoria, Royal Children’s Hospital, Victoria, 3052, Australia

    Margaret A. Sahhar

Authors
  1. Jan M. Hodgson
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  2. Lynn H. Gillam
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  3. Margaret A. Sahhar
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  4. Sylvia A. Metcalfe
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Correspondence to Jan M. Hodgson.

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Hodgson, J.M., Gillam, L.H., Sahhar, M.A. et al. “Testing Times, Challenging Choices”: An Australian Study of Prenatal Genetic Counseling. J Genet Counsel 19, 22–37 (2010). https://doi.org/10.1007/s10897-009-9248-6

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  • DOI: https://doi.org/10.1007/s10897-009-9248-6

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