A double helix begins to swirl on my screen after I upload the raw data from my 23andMe genetic test to a site called DNA Lifestyle Coach. An ethnically ambiguous illustrated girl greets me, gleefully eating a bowl of vegetables while holding her cell phone. Against a salmon-colored backdrop are the words: “MY DIET COACH,” offering a health plan “tailored” to my genetics.
Here is what the DNA Lifestyle Coach, run by a company called Titanovo, promises: For between $215 and $320, it will send you a saliva kit and analyze your genes to determine how you should best live your life for optimal mental and physical health, as well as optimal dental and skin care. For another $150 it will measure the length of your telomeres (the protective caps on the ends of our chromosomes, which typically shrink as we get older and are being studied to understand aging), to help you assess your longevity. You can also bypass Titanovo’s DNA test and instead merge data you’ve already received from 23andMe (as I did) or another testing company.
DNA Lifestyle Coach is one in a batch of companies that has emerged in recent years, promising to pare down confusing personal DNA data reports, using science, leaving you instead with a simple set of bullet points for how to live healthier, happier, stronger, smarter, longer.
There’s DNAFit. And Kinetic Diagnostics. And even a “genetic superhero test” by Orig3n, which makes DNA-based predictions about your strength, intelligence, and speed. Most of these are aimed at boosting athletic and physical performance and preventing sports-related injuries. But DNA Lifestyle Coach ventures into cosmetic and stress-reduction advice, seeking to answer questions like: What can our genes tell us about how we can sleep better? What secrets does my DNA hold about preventing aging?
As I begin to read my report, DNA Lifestyle Coach informs me: “Your genetics infer that you will struggle to lose weight more than most, so your caloric cut should be strict.” When dieting, it says, I should aim to take in 600 fewer calories a day.
At first glance, this information does not feel more enlightening than any other diet or fitness plan I have ever tried in my life. Plug my weight, height, BMI numbers and heart rate averages into apps like MyFitnessPal or Fitbit and each one will spit out similar estimates. Tell me something I don’t know. Then, it does.
According to my genes, it says up to three cups of coffee per day could be beneficial, but does not give any details as to those benefits. And the psychological effects of caffeine are supposedly less pronounced for me, which means I’m able to sleep after a couple hours even when having coffee at night. It also predicts that I sober up after alcohol quicker than most. Great! More coffee? Less intoxication? All from my genes?
It gets better. Apparently, I have awesome endurance. Like marathon runner-level endurance (if I wanted to be a professional athlete). And my DNA Lifestyle Coach says I push myself in exercise and competition. That is because I don’t have any risk for “over-anxiety,” or other “negative emotions.” I don’t think my husband would agree. But whatever. I am starting to like my genes even more.
Feeling emboldened, I sign up for the company’s telomere test, which requires sending more of my spit away in the mail. It will take several weeks to get the results back, but I have a feeling the test is going to tell me I have robust telomeres too, and that I am going to live a long, long time. It is all beginning to feel a lot like that time I had my palms read on a street corner in the French Quarter in New Orleans.
But those feel-good endorphins that come along with being told you’re superior can fade fast, and one need only dig down into the data to figure out that such an inflated sense of personal biology may not be much more than an illusion.
“You have to know, this is like the stuff you see on TV after midnight,” Stuart K. Kim tells me after I share my DNA Lifestyle Coach site password and complete health profile results with him. He’s a professor emeritus in the developmental biology and genetics program at Stanford University. “Weight loss kind of stuff, anti-aging kind of stuff. It’s pretty far out there.”
I stay on the phone with Kim as he and I click on the little information bubbles in my report next to suggestions for carbs, fats, fiber, water intake, vitamins, gluten, and lactose. In each category, the report highlights my genes and SNPs in those gene sequences (single-nucleotide polymorphisms, pronounced “snips,” which are alternative spellings of genes that come down to a one letter difference. That one letter may lead to the gene functioning differently). With each SNP comes a link to an abstract for a published academic paper (most behind a paywall) explaining how it might be associated with health.
Kim goes a step further for me. Using his own academic accounts, he kindly pulls up and reviews the studies. He gives the company credit for posting the links to the papers in the first place—allowing customers to check out some of the conclusions if they choose. “It is buyer beware. You can’t just take everything at face value.”
Problem is, as Kim begins to interpret the papers on my DNA Lifestyle Coach report in connection to my own SNPs, he can’t even make sense of it all. Kim has served as an editor of PLOS Genetics, as well as on the National Science Advisory Council. He even developed his own DNA interpretation site for a Stanford class he taught on genetics, which students (or the public) can use for free.
On the DNA Lifestyle Coach site, my SNPs + the studies = conclusions like: Your eating behavior is 50 percent likely to be hedonic (the kind of eating for pleasure that leads to obesity and is similar to addiction). Then it goes on to recommend the LEARN Diet for my genotype. Yet there is no clear answer on how exactly the company came to that assessment.
At one point, I hear Kim say in frustration, “Maybe they are just assuming nobody is going to actually look at what they are saying? You almost have to be a detective to sit down and figure this stuff out.”
* * *
“We try to be open and honest about where the science is,” says Corey McCarren, the chief operating officer for Titanovo. The company launched after a successful Kickstarter campaign last year. McCarren’s specialty is marketing, not genetics, but he notes that his founding partner and CEO, Oleksandr Savsunenko, has a Ph.D. in macromolecular chemistry from France’s Toulouse University, and created the company’s telomere length testing kit.
“The science is now in a place where there are very strong correlations” between particular gene variations and health outcomes, McCarren says. Big data—the analysis of large amounts of data to identify patterns and make predictions—is now being used in a multitude of industries, as McCarren points out. The company believes that big data can also be successfully “applied to genetics, using probabilistic approaches.”
Studies referenced on DNA Lifestyle Coach have been published in academic journals. But some research is better proven than others, he says, and the company tries to give weight to the stronger studies. The journals vary in distinction, the studies vary in size and scope, and some experiments have been replicated, while others–like this one on how cloudy apple juice may be healthier for some genotypes—have not.
The DNA Lifestyle Coach algorithm ranks studies, giving more weight to those that are more prominent or corroborated. As research results are updated, retracted, or reaffirmed, the algorithm will also revise and update the customer’s report. The company plans to release its mental wellness, dental, and skincare tests in a few months (so far you can just get results for diet fitness and telomeres).
In the future, it plans to incorporate personal data on every individual’s daily health behavior, if users opt in to answer questions about themselves, “much like Facebook and Google are taking all the big data from what people are doing online and making assumptions about people,” McCarren says. “That’s what we want to do. We want to discover those important correlations that will lead to people able to live their best lives.”
“We don’t show all the studies” that are referenced and averaged, Savsunenko explains, when I ask about the methodology. “The number of exact studies that we used and combined in order to generate the result — it is our proprietary thing. Although in reality most of the recommendations are based on the quite simple genetic and mathematical approaches.”
Fair enough. But the equations behind the inferences still feel a bit like voodoo.
Take my alcohol results: I will sober up quickly, and “alcohol consumption will likely lead to hangovers.” This is followed by 10 of my SNPs and links to six scholarly articles covering how genes are related to everything from drinking behavior and intensity, urges to drink, and alcoholism risk.
But DNA Lifestyle Coach fails to mention anything about the ALDH2 gene variant, which I already know I have, thanks to 23andMe. It causes a reaction known as “Asian flush.” My body lacks the enzyme that normally breaks down acetaldehyde, a toxic substance in alcohol. It builds up to abnormal levels even after half a glass of wine, causing the blood vessels in my face begin to expand. My skin turns the color of my merlot. My heart races. Within 15 minutes, my face and chest look hot to the touch, as if I accidentally fell asleep on the beach. People with this gene variant also have an increased risk for esophageal cancer.
Kim, who also experiences the same genetic pinkish glow when he drinks alcohol, was surprised my DNA Lifestyle Coach omitted it entirely.
When I ask Savsunenko about it, he replies that most people who have this gene already know they have it. “We are trying to get into smaller details of things. But, yeah, you are right—we should include it maybe.”
No matter what you include or omit, or how you add up and average it, genomic data interpretation is an ethically thorny and legally risky business. I wanted to know, not only if these algorithmic conclusions are safe, but if they are legal.
* * *
In the most romantic of gestures, my husband bought me a 23andMe saliva kit for my birthday in 2015. That was two years after 23andMe received an FDA warning to stop interpreting specific health data from its genetic tests.
Using a medical device like a DNA kit and relying on companies’, rather than doctors’, interpretations of our unsupervised genetic information from those kits, the FDA said, might lead a patient to undergo unnecessary surgeries to prevent cancer, increase or decrease doses or stop a doctor’s prescriptions and therapy altogether.
By the time I received my 23andMe results, the company had switched to focusing more on ancestry (it told me I am 50 percent East Asian and 50 percent European—no shocker), other traits like eye color (I’m likely to have dark-colored eyes—also duh), whether I can detect taste bitter or sweet tastes (it told me I like both), or if I’m more likely to sneeze in the sun (apparently I am). My report was mildly entertaining for a few hours, but it revealed no real life-altering information. I didn’t open it again until last month, when I dumped its contents into DNA Lifestyle Coach.
By then, the FDA had softened its stance on 23andMe’s tests and granted the company approval to tell its customers whether they have an increased risk for 10 specific conditions. These include Parkinson’s, late onset Alzheimer’s, Celiac disease, and a handful of other disorders that can affect movement, blood clotting, digestion or other health issues. My updated 23andMe report offered the reassuring words “variant not detected” alongside each of the conditions.
But in the years since the legal drama first began to unfold with 23andMe, other sites were ramping up, carefully tiptoeing around the kind of rules that could get them a cease and desist letter from the FDA.
DNA Lifestyle Coach has avoided this controversy, for now, by steering clear of medical discussions, McCarren tells me. When a genetic test company tells a customer: “You have nine times more likelihood of developing heart disease—take two aspirin a day,” he believes that is when the legal terrain gets murky. DNA Lifestyle Coach “is not a product to help you manage disease,” he says. “This is a product to help you make better lifestyle decisions.”
It’s not so different from seeking advice from a personal trainer at your gym, or a diet and fitness book on Amazon, McCarren says. Maybe you will see health improvements, maybe not, but you won’t get a medical diagnosis and you won’t risk doing any real harm. The difference, he adds, is “that there is strong enough evidence there to give people useful advice, which is better than just throwing a dart at a (diet) board and saying, ‘I’ll go with this one.’”
Most of these companies rely on similar data sets and “package it in different ways to try to make it understandable,” Barry Starr, another geneticist from Stanford University, tells me. “I was trying to think of a result that would make me change my lifestyle—I couldn’t think of one.”
There is just still so much geneticists still do not know, Starr says. Just because 23andMe cleared me of variants for 10 conditions does not at all mean I won’t still develop any one of them. One gene sequence is most likely part of an orchestra of a dozen or even a hundred others (many not yet identified)—all interacting to create a particular result. We also have gene sequences that protect us—which can counteract the “bad” SNP affects.
Your environment, the way you were reared and raised, and every choice you’ve made about your life until now may have had an impact on whether some of your genes are turned on, or “expressed” (as studied in the growing field of epigenetics). And Starr tells me that different DNA sequencing companies test different genes, which could lead to contradictory predictive health outlooks.
* * *
In the wake of the FDA’s 23andMe ban, Kim’s students became enamored by the debate over how much you have a right to know about your own genes. Some argued “I have a right to know. It’s my DNA. I’m allowed to use my brain to look at my own DNA,” Kim tells me. But others asserted that, “interpretation can go awry. Someone could make a stupid decision and hurt themselves.”
DNA Lifestyle Coach piques my interest enough to seek out more data. For just $5, I also sign up for Promethease, a genomic information clearinghouse. Again, I plug in my 23andMe raw results.
Promethease avoids the FDA regulations imposed upon 23andMe because it does not offer the spit kit. Promethease takes the raw results from 23andMe or Ancestry.com and runs it all against published academic genetic studies in SNPedia (created by the founders of Promethease), which is like a Wikipedia for genomic data, giving you a far more sweeping view of your DNA than either 23andMe or DNA Lifestyle Coach.
When I download my Promethease file, compiled on the screen before me into a mind-numbing document of multi-colored pie graphs, are 20,269 of my SNPs, looking for associations with everything from enhanced hippocampal volume, to better performing muscles, to worse hang overs, lack of empathy, longevity and gout. They are divided by colors: red for “bad” impact, green for “good,” and grey for “not set,” or not enough information to know.
In filtering first for only the “bad” as any morbidly curious person would (is there a SNP for that?) it seems my DNA is beset by perilous risks: melanoma, ovarian cancer, depression, obesity, schizophrenia, coronary artery disease, breast cancer, lung cancer, colorectal cancer, and of course Alzheimer’s and Parkinson’s. Depending on how you look at my Promethease report, I’m also at risk for age-related macular degeneration, or I’m not. I’m at risk for developing Crohn’s Disease, or wait, maybe not. Different SNPs contradict each other.
Should I run this by a doctor? I wonder. Or a genetic counselor? What does one do with such a vomit pile of personal data?
It is this very conundrum that could give a company like DNA Lifestyle Coach—as its algorithms get more sophisticated—an upper hand with the public in the future. “We are focused on actionable results, McCarren says. “We assume our customers are not interested in just the genetic reports…we are not trying to overload you with the information.”
* * *
With my own DNA bible now at my fingertips, I still do not feel any more informed about my own health future than I did before. Despite DNA Lifestyle Coach’s fortune cookie-like predictions, I still embrace our inability to foretell most outcomes. My father has diabetes. My grandfather had heart disease. My grandmother had breast cancer. I always knew I could end up with each of these conditions, or I could dodge them altogether.
As dazzling as it is to see our DNA sequenced for so little cost, it is premature for us to map out life plans exclusively based on our genes. Of course, with science progressing so rapidly, that could change in years to come. My telomere test results, which took about two months to come back, indicate that I just might just live long enough to witness that future.
Longer telomeres have been associated with more resilient cellular health. My telomeres are longer than 59 percent of women of my age, according to the test results, which puts me in the “Very Good Zone.” It did not offer me any suggestions to improve my telomere length, although studies have found that meditation and reduced stress could have an impact. Instead, it gave me a calculation of my biological age (35), which is three years younger than my actual age. At the end of the results page, it also offered this caveat: “Keep in mind the full dynamics of telomere length have yet to be discovered.”