Considering the True Costs of At-Home DNA Tests
My great-uncles on my mother’s side are both botanists. In fact, along with a fun little blood disorder and esophageal issues, botany runs in my family. Perhaps that’s why both of my uncles are fascinated by our family’s genealogy. Recently, my uncle Milton sent me a robust study — his true life’s work — that traces our family’s lineage all the way from the fields of Aquitaine to Cajun Country in Louisiana. Over the decades, he’s gone through every document he could get his hands on, from birth certificates to causes of death, following our family tree from its outermost leaves to a fair number of early roots.
On my father’s side, a great-aunt was the dedicated recorder of our family history, from the original immigrants who traveled from Germany to Pennsylvania until they stopped in Louisiana. On that side, we have lovely diseases such as Parkinson’s, heart disease, diabetes, liver cancer and more. (My suspicion is that abandoning fermented foods such as sauerkraut didn’t help.) But as I flip through these pages of research — all done by hand long before Google was a thing — I realize I’m fortunate to have this information. Not everyone does. And as families disperse across the globe like wayward seeds, we lose contact with our roots and our ancestors.
In an age where identity rules, we’re all supposed to be special, unique and driven by a certain purpose. But without knowledge of our past, it’s so much harder to find our way forward. Writers are in my family tree, as are farmers, cooks and entrepreneurs. I know who I am because I’ve been told who I was throughout every generation from the beginning of my life, and I’ve seen diseases grab hold of my elders and claim them in their sleep.
And that’s also why I understand the deep-seated desire that drives people to purchase at-home DNA test kits. If you don’t have an uncle Milton on your side, how else will you know about your family heritage and health? If you’re adopted, how else might you learn about genetic health concerns that might arise in the future? If you’re at risk for Parkinson’s or Alzheimer’s, wouldn’t you want to know? If there were something you could do to prevent a certain outcome, wouldn’t you want the clues?
Companies such as 23andMe claim to offer that knowledge. All you have to do is pay either $99 for their ancestors service, or $199 for additional health reports, and then fill a test tube with spit. “Know more about your health,” they say. “Root for your roots!” And, in the process, contribute to medical advances by joining a robust database of genetic blueprints that could help doctors, researchers and scientists find cures for cancer, Parkinson’s and Alzheimer’s. “Big data is going to make us all healthier,” Anne Wojcicki, founder of 23andMe, told Fast Company in 2013. She claimed it could help you learn more about your genetic makeup, become more proactive about your health, protect your children and help health care move toward prevention rather than reactionary medicine. “We set out with this company to revolutionize health care,” Wojcicki said, but first she had to build the database of her dreams, one wad of spit at a time.
It was the database that intrigued investors such as Facebook, Israeli-Russian billionaire Yuri Milner, and Google. Of course, Anne Wojcicki’s marriage to Google founder Sergei Brin certainly didn’t hurt. The couple has since separated, but Brin remains dedicated to the company, especially since Parkinson’s runs in his family as well. Perhaps that’s why 23andMe has pursued this particular disease with such determination. According to the Fast Company article, 23andMe is “forming the world’s single largest Parkinson’s community for genetic research” and has even identified two genes highly correlative to those who develop the disease. But what exactly is in this database?
In that same Fast Company article, 23andMe board member Patrick Chung said, “The long game is not to make money selling kits, although the kits are essential to get the base level data. Once you have the data, 23andMe does actually become the Google of personalized health care.” Personally, I find that a very curious connection to make, and not just because 23andMe’s founder Wojcicki was literally in bed with Google early in her company’s history. As I’ve pointed out before, Google is not the “Don’t be evil” company it proclaimed itself to be in the early days. In fact, the search engine has merely been a front for gathering massive amounts of user data that could be stored indefinitely and sold to the highest bidder. Google is not a company you want to be emulating, but here we are. So what happens with your genetic blueprint once it’s in the database?
As pointed out in Scientific American, the real goal of companies such as 23andMe is to hoard your personal data so that it can be sold to pharmaceutical and biotech companies. “The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public,” Charles Seife wrote in November 2013. A Forbes article that same year highlighted that even if 23andMe sold one million DNA test kits at $100 a pop, that would only equate to $100 million in revenue — chump change to the likes of Google. So why so many fancy investors? What’s their perceived return on investment? As usual with data collection companies, the product was never the DNA test kit itself. The product was the user. The product is you.
In 2017 the direct-to-consumer genetic testing industry was a $100 million market. By 2022 it’s expected to be worth $340 million. In 2015 the company 23andMe sold some of their test results to Genentech for $10 million, and in 2018 Sequoia Capital gave the company $250 million in funding to develop drugs based on user DNA. The company has also received half a million dollars in funding from the National Institutes of Health to help with studies on allergies and asthma. And according to that same Fast Company article, where the company all but laid out their business model, they hope to partner with single-payer health care systems around the world to target users and cut down on health care expenses.
Chung even went so far as to say the following: “Say a country like China could just pass a law one day that says every baby that’s been born is going to have a blood sample taken at birth, and we’re going to genotype that blood sample. The data is meaningless unless you get those people to report other biological and lifestyle information. And what are the chances that the Chinese government is trusted or competent enough to produce a website where people can feel like they can tell the government everything about their health? 23andMe has proven this is something we’ve done very, very well.”
Yet, this begs the question: Why should we tell 23andMe everything about our health? Why should we trust them?
Of course, companies like 23andMe make sure to tell users that, while their genetic information is being shared with third parties, all personal data has been anonymized and aggregated so that you cannot be identified. Perhaps that’s why more than 80% of 23andMe’s two million–plus users have consented to this data being used for research in the hopes of finding cures for diseases such as cancer and Parkinson’s. While the company can remove your name, address and social security number from their database, that’s beside the point. As Newsweek pointed out recently, there is no such thing as anonymous genetic data.
Your genetic sequence is the most personal identifier you have as a human being. It’s more reliable than any other code out there. And once you hand over that kind of highly sensitive information, you lose the ability to control what’s done with it. Not to mention that, in combination with other databases collected and stored by the likes of Google and Facebook, it would not be difficult to take a unique piece of your genetic code and quickly identify you as the owner — and this extends to your relatives, whether they’ve spit in the tube or not. Simply cross-reference the sample against public records and you can find the source. As 23andMe warns on their Terms of Service: “Genetic Information that you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others.” Is this supposed to count as informed consent?
In addition, genetic data threatens to play a role in employment practices, national security and even facial recognition technology. According to Newsweek, the U.S. Equal Employment Opportunity Commission recently sued a utility company for requiring job applicants to submit their family’s genetic information; the FBI has voiced concerns over Chinese hackers utilizing genetic databases for building biological weapons capable of targeting specific subsets of humans; and genetically engineered bioweapons are considered a national security threat. Even U.S. Senator Chuck Schumer expressed concern, stating, “What those companies can do with all that data, our sensitive and deepest information, your genetics, is not clear and in some cases not fair and not right.” So, assuming these databases are protected by adequate security measures (which I doubt, especially since they don’t utilize “no knowledge” protocols), what can be done to protect those who use services such as 23andMe?
Well, not much. If you’re a citizen of the European Union, you have the “right to erasure” and could choose to have your genetic information removed from databases. But if you’re a citizen of the United States, no such luck. While the FDA does oversee the type of health information (or research) companies like 23andMe provide, they don’t oversee how the data is managed or used. Plus, 23andMe doesn’t exactly have the best track record when it comes to the FDA. In 2013 the government agency ordered the company to stop selling its saliva collection kits, citing that the tests weren’t accurate as diagnostic tools, providing too many false positives/negatives, especially when it came to breast and ovarian cancers. All the FDA required was for the company to validate their claims. Instead, 23andMe expanded their business, began an aggressive advertising campaign and continued to sell the DNA test kits in spite of government regulations. It wasn’t until 2018 that a test for breast cancer genes was finally approved by the FDA, but the relationship was already bruised.
And how effective are these kits anyway? Dr. Jim Evans, professor of medicine and genetics at the University of North Carolina, Chapel Hill, calls the service a “genetic parlor game.” Similarly, when given an example of someone receiving a report stating that their risk of diabetes is increased 10% over the general population’s, genetic researcher Laura Hercher said this was “a completely useless thing to find out, because the amount that variants contribute relative to lifestyle, diet, exercise, and weight is tiny.” Another doctor involved in the Fast Company article didn’t mince words: “It’s bullshit.” Maybe he’s right.
After all, almost no genetic test can prove you will contract a specific disease, and no screening test is right 100% of the time. As pointed out in Popular Science, “Even if they get it spot-on for 99.9% of all people, that means one in 1,000 will get the wrong result. 23andMe already has over one million customers, which means potentially 10,000 people have gotten false information — even given that generous hypothetical error rate.” Now, imagine that your test results reported an increased risk for Alzheimer’s or Parkinson’s. There would be very little you could do to prevent those diseases from affecting your life. Sure, you may change your lifestyle to improve your odds, but those results could just as easily lure you down the road of degradation and depression. And then, if you got a false positive and never contracted the disease…oomph.
So is this whole endeavor worth it? If you were horrified by Facebook’s data breach, or if you’re questioning privacy in relation to Google, I can’t imagine why you’d take a risk with your genetic blueprint. And even if you did know about specific mutations, and it was an accurate test result, would you change your behavior? I know heart disease runs in my family, and I still eat fried chicken every chance I get. I know coffee, cheese and dairy make my body acidic, and cancer grows in acidic environments, but would I change my behavior if I knew I were at risk for cancer due to my genes? I’ve already buried an aunt with brain cancer, and I still love Wisconsin’s finest exports. Then again, my grandfather is dying of Parkinson’s, and I still wouldn’t give a drop of my spit to 23andMe, and I would encourage — if not harass — my relatives to keep their saliva to themselves as well. But then again, I’ve got my uncle Milton’s research, and maybe you don’t. So, really, that decision is up to you.