Buyers of online gene tests may have to share their results to get insurance, reports Eloise Gibson.
Movie fans are being warned that gene tests sold as “cocktail party conservation starters” may hurt them when they apply for insurance.
It’s become trendy for companies to offer mail-in gene tests. 20th Century Fox has been marketing its Michael Fassbender-starring movie Assassin’s Creed by selling a DNA test for a variant of the Monoamine Oxidase A (MAOA) gene – sometimes called the “warrior gene”.
Until the day before the movie’s New Zealand launch on January 1, saliva-based tests were being offered at a promotional price of $US89, complete with a broader DNA screening kit promising to help people find their genetic relatives.
Ancestry bloggers overseas expressed excitement about discovering whether they and their ancestors were warriors. In New Zealand, direct-to-consumer gene tests have been growing more popular, though it isn’t clear how many people have purchased them.
In the movie, Fassbender’s character Callum Lynch discovers he is descended from a secret “Assassins society”.
Yet while it might be tempting to think gene tests can reveal all kinds of interesting personality traits, genetic researchers doubt whether the online services tell buyers anything meaningful.
And people who purchase DNA tests for fun may find they have to disclose the results years later when they apply for insurance.
According to 20th Century Fox and its partner in the promotion, direct-to-consumer gene testing company Family Tree DNA, carrying a low activity version of the MAOA gene “may cause certain carriers to engage in more risk-taking behaviours and be able to better assess their chances of success in critical situations.”
Studies have linked the gene variant to risk-taking and aggression but the effects are disputed, because they seem to depend on upbringing, ethnic group and an array of other social and genetic factors.
Since about a third of people with white European ancestry carry the low activity gene variant, researchers argue there’s no “one size fits all” answer to predict how carriers will behave.
Asked about the science behind its claims, Family Tree DNA referred to a study of 78 men that found carriers were more likely to administer a punishment of hot sauce to players in a game who they perceived had slighted them. (The gene hasn’t often been studied in women.) Other research has found that, for example, rhesus macaques with lower MAOA activity might turn to booze more readily than other monkeys.
An influential 2002 study in humans using data from the Dunedin Multidisciplinary Health and Development Study (usually called the Dunedin Study) found the gene variant was linked to higher rates of violence in Dunedin-born men – but only if the carriers suffered child abuse. Even then, it was a coin flip as to whether a man would go on to commit violent offending.
One of the researchers behind the 2002 finding, Terrie Moffit, says testing for the gene alone will not reveal anything about someone’s behaviour, “but it is making money for the movie,” she says.
Another author of the 2002 research, Richie Poulton, who is the head of the Dunedin Study, says he would not bother getting his own child tested, because knowing whether you have the variant is meaningless unless you also suffer childhood maltreatment.
The exceptions are people with a defunct copy of the gene, who have serious behavioural problems. But those people are rare.
Family Tree DNA’s fine print makes it clear the company isn’t claiming scientific accuracy. “Genetic wonders make it into popular culture and develop a life there that far outpaces their academic worth. These factoids are best used as ‘cocktail conversation’ starters,” reads the disclaimer.
People might take a gene test for fun, to learn about their ancestry or because a family member purchased them a testing kit as a gift, says Otago University law professor Mark Henaghan.
Others want to know about health, although Family Tree DNA sells its tests as tools to learn about ancestry and relatives, not health risks.
Its major rival, 23andMe, stopped offering health assessments to New Zealanders and people in several other countries after the U.S. Federal Drug Administration told the company it did not have the science to back up the assessments it was making.
It continues to give customers their raw genetic data, so they can check genes associated with health themselves.
But people taking tests today might find there are consequences if they try to apply for insurance later – including if research finds new risks associated with genes they’ve already had tests for.
While New Zealand’s voluntary code of conduct for insurers says they won’t require anyone to take a gene test, if you’ve chosen to take one at any time previously they can ask for the results.
Unlike the United States, New Zealand has no laws protecting people from genetic discrimination when seeking insurance or employment, unless it falls under another category like race discrimination. “If they ask for it, you can’t lie because that would void your insurance,” says Henaghan, who led Otago’s Human Genome Research project on ethical and legal genetic issues. Legally, companies can use risky genes to set premiums or deny cover.
“The question then is, do they take it into account? And it’s a little bit random at the moment. There’s no clear regulation about how it can be used,” says Henaghan.
Poulton and other behavioural and health researchers say most gene tests are not yet predictive enough to be used much by insurance companies, unlike, say, a family history of disease or smoking habits.
Currently only a few genes – including one for Huntington’s disease and the BRCA1 and BRCA2 genes actor Angelina Jolie carries for breast and ovarian cancer – can strongly predict a person’s risk of costing an insurer money.
But companies’ willingness to use genes may change as they search for a market edge in their underwriting.
Life insurers say they need to know if a person knows they have a very high genetic risk of dying early, or else people who know they are likely to die young will flock to buy insurance and drive up claims.
What is less clear is what insurers will do when a gene or genes are associated with some risk, but aren’t highly predictive. The answer may matter if someone needs life insurance, for example to get a mortgage, but their genes suggest an added risk.
Lawyer Katharine Reynolds wrote the chapter on genes and insurance for the human genome project’s 2009 report. She concluded there was a high risk of irrational discrimination because gene tests are so hard to interpret.
She suggested insurers could comfort people by giving out the reasons for their decisions when asked and admitting the limits of any genetic data they relied on. Once people could see their genes were being used reasonably, and like any other personal data, they might feel more comfortable having tests, she said.
“How you interpret the science is a real worry because some tests are 100 per cent predictive, while others show only small effects,” says Henaghan. “And as Richie’s (Poulton’s) studies show there are interactions with your environment. Unless they’re know someone’s whole history it could be very unfair.”