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Applying a risk governance approach to examine how professionals perceive the benefits and risks of clinical genomics in Australian healthcare

Yuwan Malakar*, Justine Lacey, Natalie A. Twine, Denis C. Bauer

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Clinical genomics is a system of multiple stakeholders and institutions. Yet, studies focusing on the comparative perspectives of these stakeholders are limited. This study engages four groups of professionals (clinical geneticists, genetic counselors, laboratory professionals, and researchers) working in clinical genomics to investigate their perceptions of the benefits and risks of using genomics in Australian healthcare. The study is underpinned by a risk governance approach. For data collection, qualitative semi-structured interviews were used. Our results show that all professionals unanimously identified that the benefit of clinical genomics lies in improving health outcomes for patients. However, the risks associated with delivering this benefit differed by professional category. We found that the further the profession was from the patient (e.g. researcher) the narrower the perceived risks were amongst the individuals interviewed. However, “privacy” as a perceived risk was ranked highly by all professions indicating a shared desire for responsible data governance practices.

Original languageEnglish
Article numbere2192472
Pages (from-to)1-24
Number of pages24
JournalNew Genetics and Society
Volume42
Issue number1
Early online date28 Mar 2023
DOIs
Publication statusPublished - 2023

Bibliographical note

Copyright the Author(s) 2023. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.

Keywords

  • Australia
  • clinical genomics
  • perceived benefits
  • perceived risks
  • risk governance

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