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Guidelines and Policies

Genetic discrimination: Australian experiences and policies
Genewatch

Genetics in Family Medicine: The Australian Handbook for General Practitioners Cth
NHMRC
National Information Resource on Genetic medicine for GPs.  Has fact sheets for each type of genetic disorder

Guidelines for Genetic Registers and Associated Genetic Material (1999) Cth
NHMRC
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.

Human Genetic Issues: AMA Policy Statement 2012 Cth
Australian Medical Association
Outlines the AMA’s views on diverse issues such as genetic privacy and non-discrimination, performance of medical genetic testing, patents, cloning, and eugenics. AMA Position statement on Human Cloning 2012.

Toolkits and Protocols

Genetics and Human Health
NHMRC
This Genetics subsite is a central repository for human genetics resources and information developed by NHMRC.

Ethics and Genetics UK
UK Clinical Ethics Network
Educational / Training resource on ethics and genetics.

Gamete donation
Nuffield Council on Bioethics

Gene Patenting
Bioethics Resources on the Web

Gene Patents and Healthcare Provision
Australian Law Reform Commission

Gene Therapy / Gene Transfer
Bioethics Resources on the Web

Genetics
Ethics & Health Law News

Genetics/Genomics
Bioethics Resources on the Web

Human Genetics Society of Australasia
The Human Genetics Society of Australasia was formed in 1977 to provide a forum for the various disciplines collected under the title of Human Genetics.

International Declaration on Human Genetic Data
UNESCO

National Information Resource on Ethics and Human Genetics
Bioethics Research Library at Georgetown University

National public health partnership
An overview of public health surveillance of genetic disorders and mapping of current genetic screening services in Australia.

NSW Centre for Genetics Education NSW
NSW Health
Providing current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them.

Reproduction and genetics
British Medical Association

Science and Technology Committee - Second Report , Genomic Medicine UK
House of Lords
Report by the House of Lords Science and Technology Committee : Background on Genomics, application of Genomic medicine, use of bioinformatics, social legal and ethical issues and training requirements.

Cases

Cancer Voices Australia v Myriad Genetics Inc [2013] FCA 65 Cth
A challenge was launched against the BRCA patent in Australia. The patent was upheld on the basis that the extraction of the DNA and RNA for testing was a manner of manufacture that could be validly covered by a patent.

JS and LS v Patient Review Panel (Health and Privacy) [2011] VCAT 856 VIC
JS and LS were a married couple whose baby had died as a result of complications in childbirth. The Patient Review Panel denied their application for sex selection. VCAT upheld the decision.

Case Study: Australia
WHO – Genomic resource centre

Case Study: Australia. References
WHO – Genomic resource centre

Case Study: New Zealand
WHO – Genomic resource centre

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