Something’s Gonna Get You: How to Freak Out — And Then Stop Freaking Out — About What’s in Your Genes
Once I dreamt I’d been thrown into the Minotaur’s labyrinth.
There were so many of us, though, that the Minotaur couldn’t keep up.
So we youths and maidens wandered, not knowing when our turn would come. We stepped delicately around bones and gore — reminders that this suspense wouldn’t last forever. The monster was really running behind. Some of the sacrificial victims were aging out of youth-and-maiden status. One guy, gray at the temples, told me he’d been waiting years.
Now and then, as I trudged up and down the endless corridors, I’d start with terror from a glimpse of the Minotaur — a huge muscled limb far down a long hall, or a flash of horn turning round a bend. And often I’d hear his grunts and bellows. Would I turn a corner and meet him, teeth shining and claws out? Surprise! Or would I suddenly find myself upside-down and flying up in the air, even before I felt the claws sink in?
What brought this suspense-dream back to mind was an email I received recently from Nebula Genomics. They were letting me know they’d finished mapping my entire genome.
Everything Science knows about my genetic code, is now a click away. As the years pass, and Science knows more, so will I. I was prepared for the geyser of information this would entail. I wasn’t prepared for the psychological consequences.
We all know we’re going to die. But now I know which forms of death are genetically more likely than others. Probability, of course, is not prophecy. Most genes don’t work that way, and anyway genes can’t foretell who’ll get hit by a bus tomorrow (though they’re widely thought to reveal odds on a person’s appetite for risk, which isn’t totally irrelevant). Going in, I knew my genetics would be complex, ambiguous information about probabilities. So I didn’t think it would have any particular impact on my psyche.
I was wrong.
This won’t be a post about regret. I think it was a good decision to sequence my genome, and I’m old enough to be astounded that I, an ordinary mook, could do so for a price of a steerage-class plane ticket. But genomic information is not trivial chit-chat knowledge. It gives pause. It has left me in a climate of suspense. But unlike the dream’s, this climate is actually closer to reality than my usual daytime state of mind.
At the end of last year, I read this essay, by Razib Khan, on genetic testing, and I found his reasons for getting a Whole Genome Sequence (WGS) convincing. As he explains:
The WGS is already… everything. To put it simply, this is an appreciating asset, the opposite of a car. {It is} everything from the most trivial to the most consequential, at your fingertips forevermore. You’re getting a read on every single position in the human genome we know how to read (which for all intents and purposes, is everything). It can be downloaded and it will last forever.
At the time this came out, Nebula Genomics, as it happened, was having a Christmas sale. So was Ancestry.com, which I bought for my wife. She is interested in what genes can tell about her ancestry, but emphatically did not want to know anything medically significant about her DNA. In fact, Khan writes, a lot of people feel this way: “I’d estimate one in five friends who get a WGS tell me there are results they choose not to view.”
I want to see everything.
Not me. I decided to see everything. I can’t stomach the thought of turning down information. Also, I don’t know enough about genetics to figure out how to filter out the results that might upset me.
As Khan warns, Nebula doesn’t offer much of a “concierge” service. Want to know if you have an alarming variant of BRCA or the Huntington’s chorea gene? You won’t find any familiar terms in your report from the company. Instead you get lists of SNP’s – single nucleotide polymorphisms. These are particular places in the genetic code where there is variation in the occurrence of one of DNA’s four letters (ACGT, which stand for Adenine, Cytosine, Guanine and Thymine. To recall their names I recall the title of this excellent film). Where some people have a one-letter difference in their sequence, that’s a SNP.
So you can read an analysis and see that you have a particular SNP. To see which chromosome it’s on, and which gene, though, you have to get familiar with the tools of public-access genetics. Databases run by the NIH, research terms and conventions. It’s an education. Totally worthwhile, but not the easiest setting of the Web-search game.
Fortunately (I think, most of the time, I guess) Nebula supplements raw data with a subscription service that constantly sends you information about how the latest research relates to your variants and their associations with physical and psychological traits. I got it. And so, for example, I have a report that tells me how recent research has found an association between some of my SNPs and a tendency to have children later in life. (Bingo – I became a father at 52. )
These reports do have one, clear easy-to-read indicator: It’s a graphic showing how your score for a trait compares to the statistical distribution of all Nebula customers. If you have a lot more markers than the average person for a given trait, then Nebula will tell you it considers that you have, for example, “a very high genetic predisposition to higher Vitamin D level” or “a very high genetic predisposition to insomnia” (I am in the 100th percentile for these.)
Now, some of this genetic information is flattering (predisposition to intelligence? I knew it!) Some is kind of distressing (a propensity to high protein consumption, hmmm). A lot, though, is a combination of confirmation (I thought so!) and nudge toward acceptance (higher-than-average predisposition to sensation-seeking? All right, fine, I’ll watch out for buses). It’s not unlike the feeling I’d get from reading horoscopes — if, instead of bullshit, horoscopes were an ever-improving picture of biological fact.
Like reading a horoscope — if horoscopes weren’t B.S.
For example: My wife and I noticed years ago that she gets more mosquito bites than I do every summer. It turns out I have genetic variants for the sort of human blood mosquitoes find meh. I also have genes associated with not delaying sexual activity (check), and with high levels of “good” HDL cholesterol (doctors have often mentioned that). I have an extremely low genetic predisposition to psychosis (yay!) and to high blood pressure (great!). But also a very low genetic predisposition to “increased physical activity.” Hey, second-grade teacher, who told my mother, “he just sits there!” — you were on to something.
The reports certainly confirm that genetics is not destiny. My higher than average predisposition to dyslexia, for example, never got me close to that condition. Genes that inclined me to acne never got their chance, either. Genes linked to Tourette’s have to be content with making me a too talkative. A higher than average genetic predisposition to not enjoying anything (anhedonia)? Those variants have had a frustrating existence, as I’ve always been all too ready to set my cares aside and have a good time (see previous point about sensation-seeking).
Nor am I here to tell you that genes amount to a set of directions for the road of life. Some of my genetic markers were found in very recent papers. There’s no guarantee the findings will hold up. Other reports are almost comically contradictory. For example, I have an above-average predisposition to corneal thinning (keratoconus) but also an above-average likelihood of unusually thick corneas. Are proteins in my cornea engaged in dubious battle, thinning and thickening without cease? More research is needed.
But of course the big news, the deadline-headline I am burying, are the Minotaur grunts and growls. The indicators of doom: The genes that say which monsters will have an easier path to snaring me.
I have (to my thinning-thickening eye) a lot of these: “Very high predispositions” to a variety of cancers and to a bucketful of hideous degenerative disorders. Some weren’t surprising, given the medical histories of relatives. Others, though, were. The genetic odds favor diseases I’ve dreaded forever and equally horrible afflictions I’ve never even heard of. That left me feeling like a cartoon character hit by a rock, an anvil and a piano who lies in the street yelling “I’m OK!” – just before the speeding truck flattens him.
Rationally, I knew I was taking these associations exactly as they should not be taken. Nebula’s materials explain this well. Scoring tendencies based on multiple SNPs describes “only genetic predispositions,” their website says
The influences of environmental factors such as lifestyle are not considered. “Second, the genetic heritability of most traits and diseases remains poorly understood. The studies in the Nebula Library list only the most significant associations, which are only a small fraction of all existing links between genetics and traits.”
Third, the score is, strictly speaking, a measure of where a person sits on a curve describing all of Nebula’s clients — for example, it might tell me that 75 percent of that group have fewer markers associated with Grayscale than I do. (Hypothetical example, obviously.) There is no easy and reliable way to get from that statistic, about a population, to an estimate of my likelihood of getting Grayscale this year. And that general problem is compounded for people who aren’t of European ancestry, as most genetic studies until recently have concentrated on white people. If your ancestors are non-European, it’s not even clear that your SNPs will have the same associations with a disease.
Not being completely rational, I did not take my polygenic scores completely well.
I am not, however, a completely rational creature. Despite the caveats and warnings, I took the scores badly, at first. They seemed to speak in the Voice of Doom. Not because they were about The End but because they spoke of a miserable continuance. Sickness that never passes, debility that only gets worse, gnawing at me on the same days that others blithely go on, immune to that kind of suffering. The genetic lottery is deeply unfair, consigning some to peaceful ends after long life, and others to pain and grief.
This had two effects, once I’d recovered from the initial dismay.
One is practical. The reports suggest that I should be careful at medical check-ups to ask about early signs of Bad Things. This is helpful (catching a Bad Thing early can make a big difference).
The second is philosophical: It’s about learning to live with dread.
As it happened, shortly after I got these results I went to Nebraska, where a friend grew up. She’d been inviting us for years to come in the spring and see the Sandhill cranes arrive in their hundreds of thousands as they migrate up the center of the continent.
The people I met in Nebraska weren’t big on dread of the unknown future. They were more about coping with the present, which often enough is hard enough. Crops fail. Livestock dies. Tornadoes strike. Blizzards bring cold and death. From what I could tell, it’s a place where reality insists that you face it.
But the endless flat planes in their monotone grays and beige weren’t grim. They formed a kind of background that sets off anything beautiful, making it pop: A red house against a pewter sky, a bald eagle dashing across your path. The same people who talked so easily and matter of factly about bankruptcies and abandoned spouses and deadly blizzards would summon up the pleasures of mushroom-hunting on a beautiful spring day, or taking in a summer breeze. Adversity didn’t ruin those moments. Maybe they made them seem more beautiful.
In that light my genetic anxiety came to feel foolish. In prospect, many experiences seem worse than death. In the moment, they’re just there. Once accepts. One has no choice. And if you’re wise, you do more than accept. You persist, as best you can, at being human. Essayists keep essaying, even if the topic is the death of a husband and a child in the same year. Philosophers keep on philosophizing: At a lecture once I heard the philosopher Martha Nussbaum make five minutes of interesting observations out of the time someone vomited on at a Wagner performance in Chicago. Lawyers keep lawyering. People tend to overestimate the power of adversity to undo us utterly, even as they underestimate how much it will change life’s surface details.
The reports come in about friends of friends — this one has had his esophagus removed due to cancer, and now cannot lie down to sleep or for any other reason. That one has lost much of his jaw, and can eat no more solid food. I know (in one case first hand, in another, by report) that neither is complaining about his fate. Both, rather, are grateful to still be. They accept their circumstances and persist in being themselves. And the impression they give is serenity.
Something is going to get me, some day. The sequence data is a reminder of that. But it would be foolish to imagine that a thing that changes my comforts and routines can end my being before the real end comes. Something persists, beneath merely disagreeable, merely inconvenient, merely humiliating change.
What, exactly, is it that, though? Maybe just the poor dumb creature who eats and sleeps and wanders. But I’ve seen, lately, a lot of people preserving something more: A presence of mind, a capability. Some part of the self that’s worthy of its own respect.
Acceptance doesn’t matter, since The Thing happens whether we accept or not. Persistence, though, takes spirit, and maybe the feeling that you just can’t afford to lose. “I have been very near the Gates of Death and have returned very weak and an old man, feeble and tottering,” William Blake wrote a friend. “but not in Spirit and Life not in the Real Man The Imagination which liveth forever.”
Unable to preserve my good health forever, I asked myself: What can I preserve?
Something is coming, the genetic tests say. It won’t be good, like life up to now, and it won’t be simple, like death. Complaining about it will make it worse. Instead, I hope I’ll cling like a maniac to what I can, and let go of what must be seen off with something like equanimity. Maybe I’ll be able to conjure up the spirit Constantine Cavafy evokes in this poem:
Above all, don’t fool yourself, don’t say
it was a dream, your ears deceived you:
don’t degrade yourself with empty hopes like these.
As one long prepared, and graced with courage,
as is right for you who proved worthy of this kind of city,
go firmly to the window
and listen with deep emotion, but not
with the whining, the pleas of a coward;
listen –your final delectation– to the voices,
to the exquisite music of that strange procession,
and say goodbye to her, to the Alexandria you are losing.
My Nebraska friend, who grew up in this flat countryside, says she became a biologist by watching creatures in a nearby creek. Specifically, she remembers a seeing a frog at the edge of a pond. It was in the jaws of a snake, slowly descending into the dark, slowly becoming food, becoming material. That drove her to study life. The study of a fire that will go out.
The cranes come to Nebraska and rest on the River Platte – thousands upon thousands of them wheeling out of the sky, settled close as Monday-morning commuters on the subway, chucking and whistling, delighting, in the fierce, showy way of birds, in each others’ company.
We watched them in a cold blind on the river bank. Their numbers scare off the predators, our guide said. But in every year’s flock there are some birds that got sick, or injured. When the vast cloud of comrade flyers rises into the sky with a huge exhalation under its wings, there are some who can’t do it any more. They’re left behind.
“The eagles will circle that one,” she said. “And when that happens, we don’t rescue them. The eagles have to eat too.”
David Bereby is an author from Brooklyn, New York. He frequently writes about science, especially science that touches on human behavior.
After decades writing about identity and conflict, he has shifted his focus “to write more about how people relate to technology, and to one another through technology.” His work has appeared in The New Yorker, The New York Times Magazine, National Geographic, Nature, Smithsonian, Aeon, Nautilus, The New Republic and many other publications. My book, “Us and Them: Understanding Your Tribal Mind” was published by Little, Brown in 2005 and in paperback (with a new subtitle, “The Science of Identity”) by the University of Chicago Press in 2008.
His newsletter about robotics in people’s lives, “Robots for the Rest of Us,” is on Substack.