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The Disclosure of Genetic Information: A Human Research Ethics Perspective

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Abstract

Increasing emphasis on genetic research means that growing numbers of human research projects in Australia will involve complex issues related to genetic privacy, familial information and genetic epidemiology. The Office of Population Health Genomics (Department of Health, Western Australia) hosted an interactive workshop to explore the ethical issues involved in the disclosure of genetic information, where researchers and members of human research ethics committees (HRECs) were asked to consider several case studies from an ethical perspective. Workshop participants used a variety of approaches to examine the complex ethical issues encountered, but did not consistently refer to the values and principles outlined in the National Statement on Ethical Conduct in Human Research (NHMRC 2007) or apply rational ethical approaches. Overall, the data suggested that both researchers and HREC members may benefit from further education and support regarding the application of ethical frameworks to the issues encountered in genetic research.

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Authors and Affiliations

  1. Department of Health, Office of Population Health Genomics, Perth, Western Australia, Australia

    Danielle E. Dye, Leanne Youngs & Peter O’Leary

  2. Anthropology and Sociology, School of Social and Cultural Studies, University of Western Australia, Perth, Australia

    Beverley McNamara

  3. Genetic Services of Western Australia, Women’s and Children’s Health Service, School of Paediatrics and Child Health, University of Western Australia, Perth, Australia

    Jack Goldblatt

  4. Centre for Population Health Research, Curtin Health Innovation Research Institute, Curtin University, Bentley, Australia

    Peter O’Leary

  5. School of Women’s and Infants’ Health, and School of Pathology and Laboratory Medicine, University of Western Australia, Perth, Australia

    Peter O’Leary

Authors
  1. Danielle E. Dye
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  2. Leanne Youngs
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  3. Beverley McNamara
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  4. Jack Goldblatt
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  5. Peter O’Leary
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Corresponding author

Correspondence to Peter O’Leary.

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Dye, D.E., Youngs, L., McNamara, B. et al. The Disclosure of Genetic Information: A Human Research Ethics Perspective. Bioethical Inquiry 7, 103–109 (2010). https://doi.org/10.1007/s11673-010-9207-9

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  • DOI: https://doi.org/10.1007/s11673-010-9207-9

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