HGM2002 Poster Abstracts: 5. Ethics: Human Genome Databases - Ethical Legal and Social Aspects
POSTER NO: 255
The Protection of Human Genetic Information
The Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC) are currently engaged in a major inquiry into the Protection of Human Genetic Information.
In particular, the federal Attorney-General and the Minister for Health and Ageing have asked us to focus, in relation to human genetic information and tissue samples, on how best to ensure:
While initial concerns and controversies in Australia mainly have related to aspects of medical research (eg, consent; re-use of samples) and access to private insurance coverage, relevant issues arise in a wide variety of contexts, including: tissue banks and genetic databases and registries; employment; medical practice; public health administration; access to government services (eg schools, nursing homes); law enforcement; and use by government authorities (eg for immigration purposes) or other bodies (eg by sports associations).
In our federal system, it is also the case that laws and practices vary across states and territories. For example, neonatal genetic tests are standard, but retention policies for these 'Guthrie cards' differ markedly. Similarly, some states have developed highly-linked health information systems (eg, incorporating hospitals, doctors' offices and public records) while others discourage such linkages due to concerns about privacy.
The challenge for Australia is to develop policies, standards and practices that promote the intelligent use of genetic information, while providing a level of security with which the community feels comfortable. The inquiry, which I am heading, is presently reviewing the adequacy of existing laws and regulatory mechanisms, but recognises that it will be even more important to develop a broad mix of strategies, such as community and professional education, and the development of official standards and industry codes that reflect emerging international best practice in this area.
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