Professor Ian Olver, the head honcho at the Cancer Council Australia, wrote this Crikey piece about why gene patent law requires urgent attention, based on his appearance today before a Senate committee inquiring into such matters.
Sally Crossing, the chair of Cancer Voices NSW, also appeared at the Senate committee hearing this morning, and here is her report for Croakey readers:
“Cancer Voices NSW was invited to put the broad cancer patient view to the Senate Community Affairs Committee Inquiry into Gene Patents on 5 August 09.
Cancer Voices NSW provides the independent voice of people affected by cancer. It is the peak coalition for cancer support and advocacy groups in NSW, working in partnership to improve the cancer experience of the nearly 40,000 people who are diagnosed each year.
We support our member group – the Breast Cancer Action Group NSW’s (BCAG NSW) submission, noting the recent major threats regarding access to and ownership of breast cancer genes, posed by enforcement of international gene patents. Cancer Voices NSW is concerned that such threats will arise for other cancers and asked the Inquiry to recommend that the Australian Government amend legislation to preclude them.
As an ethical principle, we do not believe that genes, as natural parts of the human body, should be patentable. We strongly recommend that Australian patent law be amended so that no part of the human body can be patented.
We note that international case studies show that enforcement of gene patents reduces access and drives up testing costs dramatically for patients. Enforcement also hinders scientific research and the sharing of important medical knowledge (Luigi Palombi: Gene Cartels Biotech Patents in the Age of Free Trade, Scribe Publications 2009) And we have seen no evidence that offering patents is necessary to encourage the identification or isolation of human genes.
Cancer patients want attention drawn to:
High risk cancer families: Currently some people from high risk cancer families can access genetic tests for gene mutations associated with their cancer through public familial cancer centres and testing facilities. Commercial monopolies over cancer genes, achievable through patenting, are likely to lead to increased costs, as evidenced by the projected charges by Genetic Technologies P/L which has an international patent for the BrCa 1 and Br Ca 2 genes. A longer term outcome would be increased health care costs for cancer treatment that may well have been avoided.
Medical research & pharmacogenomics: Cancer Voices is very aware of the need for access to genetic material by medical researchers. We see the development of pharmacogenomics, or personalised treatment though the use of genetic testing of our tumour tissue, to be the light on the hill for we cancer patients. Personalised cancer treatment, using the recent surge in knowledge about human genes, will improve patient outcomes and reduce wastage of ineffective drugs and the overall costs of health care.
We are all hoping that reserachers will make progress quickly so that we, as well as those who follow us, can benefit. I firmly include myself among those hopers!
To this end we have successfully encouraged the Cancer Council NSW to fund a collaborative study, and have warmly welcomed the International Cancer Genome Consortium, supported by the Australian Government to the tune of $20m. That project aims to speed up delivery of personalised treatment. We are concerned that if if genes and genetic material can be patented, and if those patents are enforced, this vital area of medical research will be more costly, slower and less translatable to the end beneficiaries.
Cancer Voices NSW, in its role of representing the interests of people affected by cancer strongly supports an amendment of the Patents Act, to prohibit the granting of patents over such natural materials as human genes. Apart from the ethical aspects, the understanding of the role of genes in cancer is an exciting new field with enormous potential for us all. We do not want to see it compromised by patent monopolies over human genes, limiting badly needed opportunities in diagnosis, prognosis and treatment of cancer (and many other diseases).
In parallel, we also commend the establishment of a National Genetic Framework as proposed by the Royal College of Pathologists of Australasia, to ensure that Australia has appropriate regulations of genetic testing in place.