Breast cancer survivor fights for the right to own her own genes.

By Tracy Bowden.

The High Court in Canberra has begun hearing a case pitting 69-year-old Brisbane grandmother Yvonne D’Arcy against a US biotech company over who owns human genes.

Ms D’Arcy is making her first visit to Canberra for the hearing and she is nervous.

“Seven judges in the High Court in Canberra, I am very apprehensive that they are not going to go our way, but I have to be positive, I must be,” she told the ABC’s 7.30 program.

Lawyer Rebecca Gilsenan, who is representing Ms D’Arcy, said: “People are shocked to learn that their unique genetic code, the moment it is outside of their body and in the test tube, is not owned by them anymore – it’s owned by a corporation.”

At the centre of the legal battle is the BRCA1 gene mutation, which hit the headlines when actress Angelina Jolie opted to have a preventive double mastectomy.

Tests revealed Jolie carried the BRCA1 gene mutation, which meant she had a high chance of developing breast and ovarian cancer.

Utah-based Myriad Genetics patented the BRCA1 gene back in the late 1990s.

Critics in the US claimed the company's monopoly meant that genetic testing cost thousands of dollars.

American Civil Liberties Union challenged the patent, and the US Federal Court ruled against Myriad.

Australian patent lawyer Luigi Palombi supports that decision.

"The United States scientists are free to use these materials not just for research, but for clinical applications," Mr Palombi said.

"But in Australia that strictly is not possible as the law stands at the moment."

Ms D'Arcy decided she needed to challenge the Myriad patent in the Australian courts.

"I have had breast cancer twice," she said.

"The chemotherapy and the treatment is so awful to go through, it really is.

"I have met a lot of women with genetic cancer and if I can help them in any way stop having to have chemo and radiation therapy then I will have done my job."

According to Ms Gilsenan the issue is about more than just one particular gene.

"It's very significant, it's fundamental, in a sense, as to whether this genetic information, whether it's the BRCA1 gene or another gene, is capable of being privately owned," she said.

"And that has significance for research, for the development of diagnostic tests and ultimately for the development of cures to genetically-caused diseases.

"There's other gene patents in force that have been given out over the last couple of decades, so the case has significance for other gene patents as well."

Human gene 'discovery not invention', lawyer argues

In a five-year legal struggle, Ms D'Arcy and her legal team have lost twice in the Federal Court.

The court ruled that when isolated, the gene resulted in an artificially created state of affairs for economic benefit, so was an invention.

As Ms Gilsenan explains, Ms D'Arcy's appeal in the High Court takes a different view.

"The crux of the argument that we will be putting to the High Court is that a human gene, merely by the fact that it is isolated from the human body is not an invention," she said.

"We say it's a discovery. Discoveries are not patentable subject matter."

The law firm representing Myriad Genetics told 7.30 in a statement:

"The case has been widely reported as concerning Myriad's attempt to patent the BRCA 1 breast cancer gene. This is incorrect. The claims relate not to a "gene" but rather to an isolated nucleic acid sequence that is chemically, structurally and functionally different from that which is found in the human body."

Ms D'Arcy disagrees, "They didn't invent it or manufacture it, so it is not morally right, it is wrong. It is still part of me, it is not theirs to have".

So far in Australia, Myriad Genetics has not enforced the patent, but the uncertainty makes researchers wary.

"What we know from talking to researchers is the fact that it could be enforced has a chilling effect, because they are concerned they could be sued for patent infringement as has happened in other countries," Ms Gilsenan said.

Patent lawyer Mr Palombi believes the Australian courts should follow the lead of the US.

"The issue here is not just about breast and ovarian cancer ... it's about what our researchers can do in terms of being able to utilise other genetic mutations that can be used in useful ways that can result in better treatments, better diagnostics and better medicine for Australians," he said.

Ms D'Arcy said she will keep fighting as long as she can.

"A lot of people are behind me; the public are behind me and that's why I'm doing it," she said.

"I won't let them go, I won't stop.

"Not until my legal team says to me, 'Yvonne, we can't go any further'."

This post originally appeared on the ABC and was republished here with full permission. 

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