THE CURE - Column
Years ago I met— sort of — the actor Ethan Hawke. It was late at night and we were both checking into a Toronto hotel. We were the only ones in the lobby and there was an awkward silence as we waited for our keys. He gave me a smile, a nod and a “hey.”
Doing my best to remain cool, I responded with a limp right-back-at-you “hey.”
Hawke got his room key and said good night.
I still kick myself for not striking up a conversation. I’m a fan. I especially love his screenwriting. And, ironically, I was giving a talk about one of his best-known films – the 1997 GATTACA – the very next day. It would have been the perfect conversation starter. I’m pretty certain that Hawke and I would still be buddies.
What would I have said to my new pal? GATTACA was great, Ethan. But it got the science and ethics wrong. The movie portrayed a world where genetic discrimination rules. And your character is focused on escaping a genetically determined “destiny.”
GATTACA an inaccurate portrayal of the role of genes in our lives (the relationship between genes and most human traits is ridiculously complex and rarely determinative), and this kind of dystopian speculation has fuelled and misinformed science policy for years. There has been an ongoing GATTACA-fication of how the risks and harms of emerging health technologies are presented and interpreted.
Too much Frankenstein. Too few give it time.
Nearly 30 years after the Human Genome Project (HGP) promised to revolutionize our lives, there are still no truly revolutionizing health applications. But there are also no cloned armies or designer babies, and there is no vast genetic underclass. Just as the science has proved more complicated and less immediately translational than anticipated, the much-hyped social and ethical issues have also proved more nuanced and, to be frank, far less issue-like.
Concerns about genetic discrimination, for example, have been with us since the start of the HGP in the early 1990s. In fact, it might be the most written about and studied of all genetic policy issues. (Google Scholar gives me 10,100 hits for “genetic discrimination,” compared with 452 for the well-documented problem of “obesity bias.”) Many countries around the world have enacted laws to combat the phenomenon. In the US, for example, there is the Genetic Information Non-discrimination Act. And here in Canada, there has been a recent push – including a 2015 bill – for our own genetic discrimination laws.
But are special laws really needed?
First, there is little evidence to support the idea that genetic discrimination is a big problem. If it does happen, it certainly doesn’t happen on a scale that would classify it as a pressing policy dilemma. Sure, “there is widespread concern about genetic discrimination,” as Stanford University’s Hank Greely wrote in the New England Journal of Medicine in 2005. But, he said, there is also “no evidence that it is common.” A 2013 “critical review of over 20 years of genetic discrimination studies” by McGill University’s Yann Joly and colleagues found the evidence to be less than convincing and, as a result, they suggest that it would be “extremely difficult, at the moment, to justify policy action taken on the basis of evidence alone.” This was also the conclusion of well-known Harvard University genetic research Robert Green and colleagues in a 2015 article critiquing the need for the US law. The authors note that while concerns endure, “there have been very few cases of discrimination.”
Second, if it does happen, the real question should be whether the discrimination is justified and/or rational. Despite all the hype and headlines, the vast majority of genetic risk information isn’t terribly predictive. In fact, genetic risk information is usually far less predictive of future health than your blood pressure or Body Mass Index (BMI). Yes, there are a few highly predictive cancer genes (such as those related to breast cancer) and rare monogenic diseases (such as Huntington’s disease — if you have the gene, you get the disease). The majority of the examples used by the advocates of legislative reform focus on the stories and studies associated with these conditions, which, because of their rarity and predictive value, are not really appropriate analogs for most of the information associated with genetic testing.
If discrimination is happening based on the idea that genetic predispositions are more predictive than they actually are, this is, at the core, an education and awareness problem. It is not an issue in need of a policy-ossifying legislative fix. The tougher question is whether entities like insurance companies should be allowed to use information about those rare cancer genes and monogenic diseases.
I’m no booster of the insurance industry, but it should not be forgotten that it is an industry based on the ability to discriminate. That’s how it works. So if some form of personal information is genuinely predictive of a future health risk — be it genetic or otherwise — the law says insurers can use the information. If someone has high blood pressure, for example, an insurance company can use that information to discriminate (e.g., charge higher rates). Should genetic information be treated differently, or should we also have an anti-high blood pressure discrimination law?
And this raises another challenge. What is “genetic” health information? High blood pressure is influenced by your genes, ditto your BMI, cholesterol levels and, perhaps, addictive behaviours. Sure, the relationship is ridiculously complicated, but genes are involved. So how “genetic” does a condition have to be before the use of the information would trigger the unfair discrimination concern? When would the double standard kick in? For most diseases, there is no bright line between what is and what is not genetic.
If Canadians decide they don’t like how insurance works — that is, using risk information to rate coverage – perhaps we should revisit the entire system (e.g., explore guaranteed minimums for life insurance). But to treat genetic risk information differently from other forms of health information creates a number of issues, including questions of fairness and the legitimization of the unscientific idea that all genetic information is special, powerful and worthy of unique protection (an idea called genetic exceptionalism).
Indeed, I think this latter point is one reason that studies find that many people, including patients, are concerned about genetic discrimination. For over two decades we have been told — by researchers, politicians and popular culture (thanks Ethan) — that genetic information is unique and that we ought to worry about genetic discrimination. The public debate about genetic discrimination gets pulled off the evidence-based rails by a self-reinforcing vortex of science and ethics hype.
Of course, there are many other factors driving the push for these laws, including the hope patients will feel comfortable getting needed genetic tests, the necessity to recruit patients for genetic studies, the desire to promote innovation and the intuitive appeal of the concern (how can genetic discrimination be okay?). But, again, all of these concerns flow more from popular perceptions of the issue than from what a more dispassionate analysis tells us.
So, Ethan, I guess what I’m trying to say is that we need less GATTACA-fication and more conceptually consistent, sustainable and evidence-informed science policy. Now, about your movie Boyhood…