Protection of human genetic information paper

The Australian Academy of Science argues that the 'Protection of Human Genetic Information Issues Paper 26', raises important issues for those engaged in scientific and medical research in Australia, and for the wider community.

Research using the data generated by the human genome project will allow the identification of many genes that are involved in health. This research requires access to medical data and gene samples from those who are well and those who are ill. There are concerns in the community that these data should not be used to the detriment of individuals.

The Academy wishes to emphasise (and to see the final report emphasise) that there is no contradiction or division between the interests of the wider Australian community and the interests of scientists and doctors involved in research in human genetics.

The potential of this research for improving health in our community is great, and must be the major concern for the future. All recommendations should be examined in the context of whether they facilitate improving human health for the community and the world.

The Academy argues that if problems with regard to privacy or ownership arise, these should be solved in a way that does not impede the progress of research that improves community help and facilitates the international profile of Australian science.