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Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals

  • Original Research
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Journal of Genetic Counseling

Abstract

Indigenous populations are thought to have particularly low levels of access to genetic health services, and cultural issues may be a contributing factor. This article presents the findings of the first study of genetic health service provision to Indigenous Australians. This qualitative study aimed to identify elements of culturally-competent genetic health service provision in Indigenous Australian contexts. Twelve semi-structured interviews were conducted with genetic counselors and clinical geneticists from around Australia who had delivered services to Indigenous Australians. Participants were asked to describe their experiences and identify any collective cultural needs of Indigenous clients, as well as comment on specific training and resources they had received or used. Interviews were audio-recorded and transcribed with thematic analysis conducted on the data. The findings show that participants were reluctant to generalize the needs of Indigenous peoples. Some participants asserted that Indigenous peoples have needs that differ from the general population, while others felt that there were no collective cultural needs, instead advocating an individualized approach. Being flexible and practical, taking time to build rapport, recognizing different family structures and decision-making processes, as well as socio-economic disadvantage were all identified as important factors in participants’ interactions with Indigenous clients. Indigenous support workers and hospital liaison officers were seen as valuable resources for effective service provision. The implications of this study for training and practice are discussed.

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Acknowledgments

This study was completed in partial fulfillment of the requirement for the Master of Genetic Counselling at The University of Melbourne/Murdoch Children’s Research Institute. This research was supported by the Victorian Government’s Operational Infrastructure Support Program. Emma Kowal is supported by an Australian Research Council Discovery Early Career Researcher Award (DE120100394).

Conflict of Interest

Authors Emma Kowal, Margaret Sahhar, Ivan Macciocca, and Lyndon Gallacher declare that they no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (The University of Melbourne, the Royal Brisbane and Women’s Hospital) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all participants included in the study

Animal studies

No animal studies were carried out by the authors for this article.

Author information

Authors and Affiliations

  1. Centre for Citizenship and Globalisation, Deakin University, Burwood, Victoria, 3125, Australia

    Emma Kowal

  2. Department of Paediatrics, The University of Melbourne, Royal Children’s Hospital, Parkville, Victoria, 3052, Australia

    Lyndon Gallacher & Margaret Sahhar

  3. Victorian Clinical Genetics Services, Murdoch Childrens Research Institute, Royal Children’s Hospital, Parkville, Victoria, 3052, Australia

    Ivan Macciocca & Margaret Sahhar

Authors
  1. Emma Kowal
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  2. Lyndon Gallacher
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  3. Ivan Macciocca
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  4. Margaret Sahhar
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Corresponding author

Correspondence to Emma Kowal.

Appendix: Interview protocol

Appendix: Interview protocol

Participants will be given the opportunity to share all aspects of their experience of working with Indigenous Australians. Therefore the flow of the interview will be dictated largely by the participant. The interviewer will use the following prompts, in no particular order, to guide the interview as necessary.

The interviewer will begin by discussing the purpose of the interview and gain audio-recorded verbal consent for the interview to take place and be recorded.

Introduction

• So < name>, what is your position? (Genetic Counselor or Clinical Geneticist)

• How long have you been practicing? Where are you currently practicing? What fields/sub-specialties do you/have you practiced in? (eg. general, cancer, pediatrics, prenatal)

• Can you tell me a bit about any experience you have had working with Indigenous Australians?

• In what contexts have you provided genetics services to Aboriginal and Torres Strait Islander people? (Hospital, general clinic or Indigenous-specific, town, state, rural/regional/remote)

Topic 1: Do Indigenous Australians have specific genetic counseling needs?

• Thinking about the consultations you have had can you tell me about similarities and differences compared to other consultations? Do you consider that Indigenous Australians have specific counseling needs? Can you give me a/some specific examples? Were there any challenges associated with those consultations? If so, can you tell me about them?

• Are there particular aspects of Indigenous culture that you find yourself needing to attend to in the context of genetics? Are there any particular considerations you need to take into account?

• What do you understand by the term ‘cultural competency’? What do you think it means in the context of genetic counseling for Indigenous Australians?

• What is your perception of your Aboriginal and Torres Strait Islander clients’ feelings about the usefulness/relevance of genetics for their health? We are looking for a range of experiences so don’t feel that you need to generalize.

Topic 2: Are Genetic Health Professionals adequately trained and resourced to provide services to Aboriginal and Torres Strait Islander peoples?

• Thinking about the first time you worked with Indigenous Australians, did you feel prepared to provide appropriate care? How well/able do you currently think you are to give such care? Can you give me an example.

• Do/did you use any tools or resources to assist you with providing these genetics services? If so, what are they? If not, what resources would you consider helpful?

• Have you ever undertaken any specific training in relation to working with Aboriginal and Torres Strait Islanders? If so, can you tell me about it? If not, what type of training do you think should be offered? By whom should this training be offered?

• How do you feel about this research being conducted?

The interviewer will close by thanking the participant and making them aware of the available debriefing options.

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Kowal, E., Gallacher, L., Macciocca, I. et al. Genetic Counseling for Indigenous Australians: an Exploratory Study from the Perspective of Genetic Health Professionals. J Genet Counsel 24, 597–607 (2015). https://doi.org/10.1007/s10897-014-9782-8

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  • DOI: https://doi.org/10.1007/s10897-014-9782-8

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