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Australia: regulating genomic data sharing to promote public trust

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Eckstein, L ORCID: 0000-0002-7161-7521, Chalmers, D ORCID: 0000-0002-7925-8818, Critchley, C, Jeanneret, R, McWhirter, R ORCID: 0000-0002-9409-8074, Nielsen, J ORCID: 0000-0002-3005-0047, Otlowski, M ORCID: 0000-0003-4707-4325 and Nicol, D ORCID: 0000-0002-6553-2839 2018 , 'Australia: regulating genomic data sharing to promote public trust' , Human Genetics , pp. 1-9 , doi: 10.1007/s00439-018-1914-z.

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Abstract

The regulation of genomic data sharing in Australia is a confusing mix of common law, legislation, ethical guidelines, and codes of practice. Beyond privacy laws, which only apply to genomic data that meets the definition of personal information, the key regulatory lever is the National Health and Medical Research Council (NHMRC) National Statement for Ethical Conduct in Human Research (“National Statement”) (2007). Compliance with the National Statement is a requirement for institutions to apply to the NHMRC for funding, and includes—among other things—requirements for review of most genomic research by Human Research Ethics Committees. The sections of the National Statement specifying requirements for research with human genomic data are currently under review, including proposed new requirements addressing the return of genetic research findings and oversight of transfer agreements. Ensuring the willingness of Australians to donate their genomic information and participate in medical research will require clarification and harmonisation of the applicable regulatory framework, along with reforms to ensure that these regulations reflect the conditions necessary to promote ongoing public trust in researchers and institutions.

Item Type: Article
Authors/Creators:Eckstein, L and Chalmers, D and Critchley, C and Jeanneret, R and McWhirter, R and Nielsen, J and Otlowski, M and Nicol, D
Keywords: genomic research, research ethics committees, privacy, information dissemination
Journal or Publication Title: Human Genetics
Publisher: Springer Berlin Heidelberg
ISSN: 1432-1203
DOI / ID Number: 10.1007/s00439-018-1914-z
Copyright Information:

Copyright 2018 The Authors. Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/

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