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Guidelines for Genetic Registers and Associated Genetic Material (1999)

The NHMRC published Guidelines for the Use of Genetic Registers in Medical Research in 1991. Rather than providing guidelines for the gathering, use and release of data related to registers, the Guidelines described the conventions which applied to these aspects of register function, and addressed only one area, namely, the use of register data for research.

Summary download document information:

Published year: 1999
Available in print: No
Status: Current

Reference No: E14
Further information: nhmrc.publications@nhmrc.gov.au

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» Download: Guidelines for Genetic Registers and Associated Genetic Material (PDF, 239kb) pdf file

Synopsis of publication:

The purpose of the Guidelines is to provide guidance to those intending to establish a genetic register, Human Research Ethics Committees that are asked to approve the establishment of a genetic register, and institutions and organisations in which a genetic register is to be established. The document identifies matters for ethical consideration that relate to the establishment and operation of a genetic register. These include administrative arrangements, recruitment of registrants, consent, confidentiality and privacy, how family members may be approached, security, amalgamation and winding up, and the collection and storage of genetic material in association with a genetic register.

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