This article first appeared in Fast Thinking magazine in 2007.
You could call it the Gattaca Hypothesis: that a day will come when your place in society is determined by the quality of your genes. The idea burst into public consciousness after the 1997 film Gattaca, about a society driven by eugenics, where the better off give birth to society’s winners, genetically engineered super babies. Less than perfect babies, on the other hand, are born into a DNA underclass, shut out of good jobs by their substandard chromosomes.
As genetic tests become more common, legislators worry that the underclass part of the Gattaca scenario is a distinct possibility, and are devising legal frameworks to deal with the issue. Fast Thinking talked to some of them to unravel the implications of the new genetic knowledge.
The price of poor genes
There are currently about 1000 genetic tests available to determine your susceptibility to diseases from breast cancer to Alzheimer’s disease. And just as there are people keen to know your spending patterns, there are powerful vested interests who would like to know your genetic history—like insurance companies. In the USA, insurance companies already use the results of genetic tests when assessing premiums.
The Australian Law Reform Commission (ALRC) was concerned enough about the potential misuse of genetic information that they convened a joint enquiry with the Australian Health Ethics Committee in 2001. Their report, Essentially Yours: The Protection of Human Genetic Information in Australia was released in 2003, the year the Human Genome was cracked. Some of their findings were reassuring.
Professor David Weisbrot, ALRC’s President, says that because Australian health insurance isn’t risk rated, you can’t be excluded from it on the basis of your health, as you can in the USA. “Even if you want private top-up cover, you don’t get asked for a risk rating,” he says.
But it’s a different story with other types of insurance, because the Australian insurance industry has an exemption from anti-discrimination laws (apart from race discrimination). “They can make distinctions between individuals as long as they can justify it on scientific and actuarial bases,” says Weisbrot. “They can make distinctions if you smoke, or you’ve had cancer. When it comes to genetics, the same issues apply.”
Of course, anyone who applies for insurance already has to supply a medical history. The danger with genetic testing is that the results will be given much greater weight than they should be, especially as the actuaries can’t yet calculate what impact specific genetic markers have on your health. “We heard a lot of anecdotal evidence that a family would call in an insurance agent who would hear there was breast cancer in the family,” says Weisbrot. “He would then throw his hands up and not proceed further.”
In 1999, Dr Kristine Barlow-Stewart, the director of the Centre for Genetics Education, undertook a study to see whether revealing a genetic condition led to discrimination. “We had 48 cases where the people didn’t have the condition itself—they were asymptomatic at the time—but they had received unfavourable treatment,” she says, adding the participants claimed they’d suffered employment and travel and life insurance-related discrimination. When a family history of Huntington’s Disease—a disease of the central nervous system—was involved, Barlow-Stewart says people felt pressured to have a genetic test to prove they were negative.
That study wasn’t conclusive, because it was based on anonymous accounts. But it was worrying enough to trigger a much larger study, the Genetic Discrimination Project, which brought together academics and legal and medical experts. The researchers involved will not discuss the results, because their work has yet to be published, though Professor Margaret Otlowski, Deputy Director of the Centre for Law and Genetics at the University of Tasmania, says the study has found “some instances of unfair treatment”.
What is clear is that if you have a predisposition to a condition—even one that hasn’t manifested—you may be denied trauma and disability, or life insurance. But Weisbrot doesn’t sound bothered by it. “Only about 30 percent of Australians have life insurance,” says Weisbrot. “Most others do their financial planning another way, with property or shares, none of which require risk rating.”
He adds that the insurance industry has a “policy authorised by the ACCC that says they will not require anyone to take a genetic test for insurance purposes.”
If the health insurance people can’t make you have a genetic test, you’d think employers wouldn’t be able to, either. Think again.
“At the moment it’s pretty unregulated,” says Weisbrot. “We were very surprised at the extent to which employers could ask for information.”
That’s because the Government has been slow to recognise the dilemmas raised by new genetic technologies, although Democrat Senator Natasha Stott-Despoja has been campaigning for genetic privacy since 1998. But her Genetic Privacy and Non-discrimination Bill was dismissed as being ‘too futuristic’.
“It was shocking enough back in 1998, but I think it’s extraordinary that we still rely on a mix of self-regulation and guidelines,” says Stott-Despoja. “In terms of what can be done with [genetic] information, there’s no real limitation on how employers and companies can use that information.”
Weisbrot says he’s spoken at seminars where human resources professionals and employers expressed outrage at the idea of companies using genetic testing. “After they’d got all that out of their system, I asked them how many of them use psychometrics, and all the hands went up,” says Weisbrot. So he’s not confident that employers wouldn’t use genetic tests if relevant tests became available. “We recommended that employers should not be able to use predictive genetic testing,” he says. “The Government accepted that, but hasn’t put it into legislation yet.”
Weisbrot says the one situation where genetic testing might be allowed is in a work place using materials hazardous to people with particular predispositions. “Beryllium is used in light bulbs and military use,” says Weisbrot. “But if you’ve got a genetic predisposition and get even the slightest exposure, you will get a nasty and aggressive cancer.”
What are your genes good for?
So far considerable brainpower has been applied to the question of how to stop the emergence of a DNA underclass. But in the USA, there have been instances of genetic tests used to gain social advantages. In April 2006, the New York Times reported that white people who had done ‘ethnic ancestry’ genetic tests and discovered they had a percentage of African American or Native American ancestry were applying for minority scholarships and health services. “One Christian is using the test to claim Jewish genetic ancestry and to demand Israeli citizenship,” added the report.
Could this happen in Australia to take advantage of funding available for indigenous groups? No, says Weisbrot. He says that in Australia the law is largely guided by what community you have a relationship with, and by who the indigenous communities recognise, not by DNA tests. “Someone who was adopted by the Aboriginal community has every right to believe they’re an indigenous person, where someone who has never had any contact has a much lower case.”
Genetic gold rush
Well if you can’t claim an Abstudy scholarship, can you claim royalties if it turns out that you have a cure for skin cancer sitting in one of your chromosomes? Yes and no.
“I’m concerned about the idea of owning a genetic makeup,” says Stott-Despoja. “The processes by which you derive a benefit or cure are patentable, but actual ownership of the gene is hugely problematic.” She says that people can patent anything if it fits the criteria of novelty, “so there is nothing in Australia to prevent ownership of a gene or gene sequence”.
This is an increasingly fraught issue internationally, because the ability to patent genes means there’s nothing to stop the natural world being carved up and privatised. According to The New York Times, once again, more than 20 percent of human genes have already been patented, with most patents held by corporations. This could be seen as the market unlocking genetic potential. Or you could see it as corporate theft, especially when some of the genetic material being patented was originally donated by patients and families to help medical research, or was taken from the third world.
Perhaps the answer is to get in first and commercialise your own DNA. Small hitch: Weisbrot says the clinical trials will cost you half a billion alone. And if somebody else manages to commercialise your DNA, you’re probably not entitled to royalties. “Basically the law says the fact that you provided an original sample doesn’t count for a whole lot, unless you’ve got agreements to the contrary,” says Weisbrot.
But if someone does take a sample of your DNA for research, they are ethically obliged to tell you if researchers have a financial stake in the outcome. While that’s polite, it isn’t going to make you money. So is there anything worthwhile you can do with the genetic information you’re carrying?
As it happens, there is.
You can now post off your DNA to a research lab and find out where your ancestors came from—and in the process discover you’re a descendant of Genghis Khan, or some Viking warrior. The most famous of these DNA heritage projects is the Genographic Project, a five-year collaboration between the National Geographic Society and IBM, which is attempting to trace patterns of human migration.
If you want to join in, send off $US99 for a swab kit, then take cheek cell samples and return. The people at Genographic will look at your genetic markers and work out where your ancestors came from. For example, the IBM publicist who arranged the Fast Thinking interview discovered her ancestors migrated to Europe from Africa via Asia.
Dr Bruce Ross, IBM’s healthcare and life sciences manager, says there is a strong privacy regime around the DNA samples. “When you get the kit it’s got a randomised ID on it, and you log online when your results are ready,” he says. “There’s no connection with the purchaser and the random ID. The DNA samples will also be destroyed at the end of the project.” He goes on to say that genetic privacy is taken very seriously. “We want to encourage people to participate in this sort of research, or in medical research,” says Ross. “Ensuring privacy is really important to keeping people motivated.”
Eventually, the migration information will be put into a historical context, thanks to the Centre for Ancient DNA at the University of Adelaide, which is collecting DNA samples for Genographic. “Other centres are working to sequence modern human populations, to provide a detailed framework of how human genetics is distributed around the world, “ says Professor Alan Cooper, the Centre’s director. “We’re the one group working with ancient DNA, to pin down the timings of those migrations.”
He says the Centre is looking at DNA from the last 10,000 years, from the post-agricultural revolution. Some of the results of this type of work have already rewritten history. “In previous work, researchers have looked at Iceland or Greenland and found the female line is of Irish descent,” says Ross.
Which means that Viking raiders must have kidnapped Irish women on their way home from pillaging the British Isles, something that hadn’t previously occurred to historians. And once the research is complete, it may be possible to look at your DNA and discover that your ancestors probably came into Europe via the Silk Road, or they raped and pillaged with Genghis Khan (who left his DNA everywhere).
Cooper says he’s had his own DNA examined. “There’s a bit of Greek in there, which was surprising. But I’m not Greek, because it’s a very tiny proportion.” He then goes on to say that because the DNA lines are so diluted, you won’t be able to profit from them. Just because you discover you’re distantly related to Cleopatra, for example, doesn’t mean you can make a claim on the pyramids.
So it seems making money out of your cells is out, at every turn. But at least, as legislators become more aware of the implications of genetic research, it’s also unlikely that you or your children are going to suffer a world governed along Gattaca lines. The science fiction scenario that is coming true in our lifetime is the prospect of DNA archaeology, enabling you to find out where you come from and where you fit into human history—what you might call the Indiana Jones Hypothesis.