A patent without a profit motive
Why a big discovery from Dunedin is owned by an American university.
It’s crazy, Richie Poulton admits, the idea that someone could patent the concept that nature works with nurture. But that, in a sense, is what happened when American researchers patented a finding from the long-running Dunedin Study. Poulton is relieved to be asked how such a thing was able to happen, since it gives him a chance to clear the air. After all, the study largely relies on the goodwill of the New Zealanders who take part in it, and the health research funding of New Zealand taxpayers.
The patents were granted to the University of Wisconsin. But he assures me the Dunedin Study researchers weren’t trying to get rich. The story starts in 2002, when Terrie Moffitt and Avshalom Caspi, then based at Wisconsin, had just published their paper in the influential journal Science. Their research showed that when a boy with a particular variant of the MAOA gene suffers child abuse, the chances increase that he’ll become a violent adult. Poulton was a contributing author on the paper, and, as head of the Dunedin Study, considered himself a custodian of any research resulting from it.
In America, concerns were growing about people facing discrimination based on their genes by the private insurers responsible for most healthcare cover.
In 2001, a Texas railway company was found to be secretly testing its employees for a rare gene linked to carpal tunnel syndrome; another employer fired a woman after she revealed she might have the genetic disorder Huntington’s disease. A young boy lost his health insurance after gene testing revealed mental retardation caused by a genetic syndrome.
Terrie Moffit says it was concern about genetic discrimination that led her and her fellow researchers to begin the process of patenting the MAOA and child abuse discovery. “At that time in history, the patenting and licensure process was the only way to control use and prevent misuse,” she says. By the time the patent was finally issued, in 2009, American lawmakers had stepped in to tackle discrimination. The Genetic Information Non-Discrimination
Act (GINA) 2008 prevents American employers from using genetic
“There were unscrupulous operators out there and the idea was to make sure the information was not [seized] upon.”
information against people when hiring, firing or making promotion decisions, and bars health insurers from using such information to increase people’s premiums or deny them cover.
The MAOA patent still exists – it is assigned to a non-profit research foundation owned by the University of Wisconsin. So far, the only use the researchers have approved is defending people in criminal trials (see main story). But soon, anyone will be able to use the gene variant to diagnose someone with increased risk of violence or antisocial behaviour. That’s because the University of Wisconsin decided not the renew the patent last year, so it will shortly lapse.
Poulton says the decision to support the patents was challenging. “In terms of our philosophy, it does raise important questions and principles,” he says. “We are all for the public good, and not for profiteering. We have no other raison d’être other than to produce information that can be used to benefit others, realising it’s already been paid for in many ways through our funding. We are all about putting out the knowledge as widely and freely as we can.”
The study members have freely given
up their time since they were babies.
“We have almost a sacred bond with our study members and the reason they give so much of themselves so willingly is because they believe they will help others. We work very hard to publish good research and to make sure that research gets heard.”
Poulton says the team was in a strange position in the early 2000s: “The people based in America realised there were unscrupulous operators out there and the idea was to make sure this information was not [seized] upon.”
Since then, the patent has been gossipped about in American academic circles. “I think [Moffitt and Caspi] copped a bit of flak, and I understand the perception, because if you don’t know the back story, it looks like researchers are trying to own the work and to make a profit or investment, and that wasn’t their motivation at all.” Genetic patents have a mixed reputation in the US, thanks to a gene that Angelina Jolie carries. A private company, Myriad Genetics, patented the right to use the BRCA-1 and BRCA-2 genes to diagnose
women at high risk of breast and ovarian cancer. These were the tests that led Jolie to choose a precautionary double mastectomy and a hysterectomy to reduce her risk of cancer.
Unlike most holders of gene patents, Myriad had the money and the desire to aggressively police its rights. It shut down rival labs and charged women more than US$3000 for its own test. Researchers and patients sued, eventually getting the patents overturned by the US Supreme Court.
Moffitt says the MAOA patent is different, because the gene variant itself is not patented, only the diagnostic process that combines the gene check and the history of child maltreatment. Unlike Myriad, Wisconsin never made money from the discovery, because nobody applied to license it. Now that the patent is expiring, genetic discrimination is possible, since GINA doesn’t cover every kind of insurance. But Columbia University’s Frances Champagne, a neuroscientist and researcher, says there is probably no immediate risk. Most gene tests are not strongly predictive enough, nor cheap enough – yet – for insurance companies to place much reliance on them, she says.
That may change as tests get cheaper. New Zealand has no legislation protecting people from genetic discrimination, unless it falls under another category, such as race discrimination, says University of Otago associate law professor Colin Gavaghan.
So how should researchers and policymakers protect people? “We could bring in a very strict gene regulatory policy,” says Champagne, “but it’s hard to cover everything. A better approach is just educating people and making them understand, yes you have a gene that has been studied but it does not mean you will have this disease or behave in this way. If you are concerned about your development or behaviour, there are other strategies that can help.”
Genetic patents have a mixed reputation in the US, thanks to a gene that Angelina Jolie carries.