Balancing benefits of human genetic research against civic concerns: Essentially Yours and beyond - the case of Australia

Hindmarsh, Richard and Abu-Bakar, A'edah (2007) Balancing benefits of human genetic research against civic concerns: Essentially Yours and beyond - the case of Australia. Personalized Medicine, 4 4: 497-505. doi:10.2217/17410541.4.4.497


Author Hindmarsh, Richard
Abu-Bakar, A'edah
Title Balancing benefits of human genetic research against civic concerns: Essentially Yours and beyond - the case of Australia
Journal name Personalized Medicine   Check publisher's open access policy
ISSN 1741-0541
Publication date 2007-11
Year available 2007
Sub-type Article (original research)
DOI 10.2217/17410541.4.4.497
Volume 4
Issue 4
Start page 497
End page 505
Total pages 9
Editor E. Abrahams
Place of publication London, England
Publisher Future Medicine
Collection year 2008
Language eng
Subject 220000 Social Sciences, Humanities and Arts - General
210000 Science - General
321213 Human Bioethics
360201 Public Policy
C1
Abstract Large human genetic databases, especially those that are biomedical and forensic, have emerged since the completion of the Human Genome Project. However, this development has occurred in a time of intense public ambivalence to life science and genomics innovations. Controversies revolve around genetic modification, stem cell technologies and human genetic databases. Debate about databases focuses on how to balance the benefits from genetic research against civic concerns, typically, privacy and unfair discrimination and, more recently, public trust. In 1989, Australian jurisdictions began developing regulatory standards for human genetic databases but from the start these lacked uniformity and adequate scope. Enduring concerns led to a widescale public inquiry (2001–2003), which produced the Essentially Yours report. However, while the Australian government supports many of the report’s recommendations, civic concerns remain as policy responses are checkered. In this special report, we reflect on the debate, the rise of the inquiry, its recommendations and policy responses, and competency and trust in regulation.
Keyword Australia
civic concerns
Essentially Yours
genetic databases
regulation
trust
Q-Index Code C1
Q-Index Status Confirmed Code

 
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Created: Thu, 01 May 2008, 15:09:13 EST by Marie-Louise Moore on behalf of National Res Centre For Environmental Toxicology