Abstract for presentation at 11th International Congress of Human Genetics

It is now widely accepted that genome sequences are of such fundamental importance, and lie so far upstream in the discovery chain, that their private ownership makes no sense. The open release policy of the Human Genome Project powerfully drove practice in this area, and now hundreds of genomes are freely available. Open genomics is a vital foundation of modern biology.
The understanding and practical use of this information is much more challenging than the sequencing step. Furthermore, in pursuing this exciting and valuable science, we should be aware of the consequences for society. For example, the study of human variation is leading to pharmacogenomic tailoring of treatment to patients, but people worry that such information in the wrong hands could affect their employment prospects. As new techniques are introduced, we need to ensure that human rights are respected, and frame regulations to preclude abuse. Bodies such as the UK Human Genetics Commission and the Australian Human Genetics Advisory Committee, examining the ethical dimension and undertaking social dialogue, are necessary components of medical advance.
But this advance is uneven. Most biomedical research is aimed at rich consumers, and most of the human disease burden is currently untouched by technological progress. In developing countries neglected diseases are rife, and in all countries sufferers from rare diseases are disadvantaged. These problems arise from excessive dependence on the free market, such that without profit incentive there are no cures. Much R&D is resourced by the patenting of genetic functionality, with exploitation aimed at maximising financial return. Delivery is under threat, with drift towards private medicine eroding national health services. We need urgently to do better: for the sake of our common humanity, and also for the sake of all our futures - since a divided world is unstable and dangerous. Our aim should be nothing less than global healthcare.