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Journal of Bioethical Inquiry

, Volume 7, Issue 1, pp 103–109 | Cite as

The Disclosure of Genetic Information: A Human Research Ethics Perspective

  • Danielle E. Dye
  • Leanne Youngs
  • Beverley McNamara
  • Jack Goldblatt
  • Peter O’LearyEmail author
Article
  • 436 Downloads

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.

Keywords

Research ethics committees Ethical reasoning Institutional review board Genetic research 

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Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  • Danielle E. Dye
    • 1
  • Leanne Youngs
    • 1
  • Beverley McNamara
    • 2
  • Jack Goldblatt
    • 3
  • Peter O’Leary
    • 1
    • 4
    • 5
    Email author
  1. 1.Department of HealthOffice of Population Health GenomicsPerthAustralia
  2. 2.Anthropology and Sociology, School of Social and Cultural Studies, University of Western AustraliaPerthAustralia
  3. 3.Genetic Services of Western AustraliaWomen’s and Children’s Health Service, School of Paediatrics and Child Health, University of Western AustraliaPerthAustralia
  4. 4.Centre for Population Health Research, Curtin Health Innovation Research InstituteCurtin UniversityBentleyAustralia
  5. 5.School of Women’s and Infants’ Health, and School of Pathology and Laboratory MedicineUniversity of Western AustraliaPerthAustralia

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