Reserving the right to protect our genetic code
It is encouraging to see that a spirit of bipartisanship is being brought to the issue of patenting human genes.
However, it will take more than a recent House of Representatives motion calling for an end to the patenting of isolated human DNA to achieve change.
Despite the US Federal Court finding patents for the BRCA1 and 2 genes invalid, the weight of precedent is against the finding being upheld.
In the most notable case, Moore v University of California, a leukaemia patient discovered several years after surgery that his doctor had cultured and patented cells from his diseased spleen.
This patent, sought without Mr. Moore’s knowledge or consent, even though it was called the Mo cell line, had a commercial value of over $3 million US and a potential development value into the billions of dollars.
While the California Supreme Court agreed Mr. Moore had not consented to the research, his claim for a portion of the proceeds was denied. This it was claimed would inhibit research.
Research facilities and scientists have no hesitation in turning the human body into a commodity via patents, yet the law tolerates participants in clinical trials, or people misled like Mr. Moore, receiving nothing in return.
Jurists including William Blackstone have insisted that the human body has a unique legal character prohibiting ownership, except to permit burial of the dead or conduct medical research.
Others argue that the poor and other vulnerable groups would endanger their health and debase the sacred or special quality that is “being human” if incentives were offered for tissue donations or participation in research. Human Tissue Acts throughout Australia prohibit such offers being made.
However, it is time for a rethink in our courts and parliaments. Just because a tissue sample is removed from you, this should not mean it becomes the property of the first physician to claim it. The sample retains the unique DNA sequences of its source, yet the law generally refuses to acknowledge such a link, for fear that a concept of “self ownership” is equivalent to slavery.
Hints of change came in the recent UK case of Yearworth v NHS Trust though, where several cancer patients sued the Health Service for failure to properly store their semen samples.
Stored in the event treatment made them infertile, the court found that the claimants had a limited right to use the samples and as such, a qualified form of ownership.
All Australians should recognise their DNA as a unique form of property, with an ever increasing therapeutic and financial value. We should value it much like we value the family home, because every cell of our body reveals our heritage down through the ages.
Corporations have enclosed much of it with patents and the BCRA genes are just the latest example.
Self ownership may be an essential counterweight to the march of patents. Just as Mabo overturned terra nullius, it is time to recognise that tissue banks and laboratories here and overseas do not hold anonymous samples.
Each sample tells the biological story of an individual and their family. One generation’s progeny will inextricably link them to all who proceeded and those to follow.
These linkages will be written throughout the combined genetic codes of all blood relatives.
If Native Title is recognition of ongoing Aboriginal spiritual and cultural relationship to land, our shared genetic code shows our common, continuous inheritance, while variations make each of us individuals.
Courts can address some of the issues, but our legislators should and can do more than move motions, before patents extinguish all of our genetic “native title” rights.
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