Emerging Issues in the Protection of Human Genetic Information: Gene Patenting and Human Health
The Australian Law Reform Commission (ALRC) has completed two major inquiries into ELSI-genetics, culminating in the reports Essentially Yours: The Protection of Human Genetic Information in Australia (2003), and Genes and Ingenuity: Gene Patenting and Human Health (2004).
The first inquiry considered, with respect to human genetic information, how best to: (a) protect privacy interests; (b) protect against unfair discrimination; and (c) ensure the maintenance of the highest ethical standards in research and practice.
These concerns were explored across a wide range of contexts, including: ethical oversight of scientific research; clinical genetic services; collection and use of DNA samples by law enforcement agencies; the use of genetic information by insurers, employers and immigration authorities; the management of tissue banks and databases; DNA parentage testing; the construction of racial, ethnic and cultural identity; and the use of genetic testing and information in sports.
The second inquiry examined the laws and practices governing intellectual property rights over genetic materials and related technologies, with a special focus on human health. The ALRC considered the impact of IP laws and practices (in Australia and globally) on: (a) research and its subsequent application and commercialisation; (b) the biotechnology sector; and (c) the cost-effective provision of healthcare.
This presentation explores the ALRC’s key findings and recommendations, and some broader themes that emerged during the intensive community consultation process. In Genes & Ingenuity, the ALRC made some recommendations for changes to the Patent Act, but many more were directed at governments, health departments, industry, universities and others, urging a much more informed and strategic approach to intellectual property rights in this area.