Everything you need to know about direct-to-consumer genetic tests—corrected link.
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April 22, 2019
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I'm a reporter covering health and science with insatiable curiosity. I love everything I learn, not all of which gets its own story. Each week, I'll bring you some of my favorite facts that I picked up on the job or while out living life.
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While I was away from Scrap Facts these past few weeks, I’ve been working on a big project for Quartz. This week, we’re bringing you a series of stories and interactives that will tell you everything you need to know about the world of companies like AncestryDNA and 23andMe.
Chances are, if you’re reading this you either have taken a direct-to-consumer (or DTC) genetic test, or you know someone who has.
There’s a good reason these tests are so popular—people are curious about what makes them them. Roughly 16 years ago, when scientists celebrated the near-completion of the Human Genome Project, they promised us that genetics could finally bring us personalized medicine, or treatments specifically designed for our bodies’ unique composition. Most of us have yet to see any real breakthroughs as a result of genetics yet. This is because science is hard, genetics are incredibly complex, and it’s normal for a medical breakthrough to take years to reach the general population.
However, a slew of companies have jumped in and tried to satisfy our yearning to explore our own DNA. Although I firmly believe that interest in science is a good thing, company advertising (and even the science itself in some cases) can be massively overstated. Today, I bring you a complete overview of this brave, new world. I hope you enjoy it.
You’ll notice this series is part of our membership content. You can sign up for a free trial here, or, if that is not feasible for you, email me at email@example.com and I can get you a PDF.
As always, here are my favorite scrap facts:
The Human Genome Project was never fully completed.
In April 2003, a White House press conference filled with pomp and circumstance announced that an international group of scientists led by the US had finally finished sequencing the human genome, two years ahead of schedule and under budget. Finishing early and under budget alone were noteworthy announcements (show me one industry where that happens routinely), but the fact that all of our genes were finally understood was huge news at the time.
The DNA for the Human Genome Project came from 5 to 10 volunteers who gave blood samples for the project. Scientists cut up their DNA and sequenced bits and pieces at a time. They left out some of the parts of our DNA, though, that repeat for several thousand basepairs. It was hard to see where these sections actually fit into the whole thing.
Scientists didn’t consider this DNA to be particularly important, but now that they’ve realized it probably does contribute to our biology in some way, they’re working on finishing it out.
Early direct-to-consumer genetic tests advertised in newspapers and Cosmopolitan.
Before the rise of AncestryDNA, FamilyTreeDNA, and 23andMe, there were a handful of direct-to-consumer genetic tests that popped up sporadically in the UK and US. One, called University Diagnostics, offered to do carrier screening tests for cystic fibrosis. Carrier screening tests show if you have a copy of a specific mutation on a gene associated with a disease. These copies are recessive, meaning that you won’t get sick if you only have one, but if you and your partner both have recessive copies, they could be passed down to children. Having two copies of certain recessive genes results in illness—in this case, CF.
This particular company advertised in Cosmopolitan (presumably the UK version) in the late 1990s.
Another testing company in the US called the Genetics and IVF Institute used to offer screening on the BRCA1/2 genes that look for mutations that put a person (usually a woman) at high risk of developing breast and ovarian cancer. They also took to advertising in local newspapers.
They quit not because the US Food and Drug Administration called them out for marketing an unapproved medical service (which famously happened to 23andMe in 2013), but because another company called Myriad genetics patented that particular mutation and forced them to quit.
Weirdly, no one can patent genes—the US Supreme Court later ruled on this issue in another lawsuit brought forth by Myriad. Genes are naturally occurring, and naturally occurring things can’t have patents. But you can patent a sequence of DNA, which is how Myriad kept some of its exclusive testing rights. (Genetics and IVF Institute now focuses on fertility testing, so it’s probably not still bothered by the issue.)
23andMe initially cost $999, and once threw a promotional party with Harvey Weinstein, Ivanka Trump, and Rupert Murdoch.
23andMe now costs $199 for its health and ancestry tests (if you’re living in the US), but it used to be way more expensive. When the company was getting off the ground in 2007 (before their run-in with the US Food and Drug Administration in 2013), it through “spit parties” to try to gain popularity. The thinking was that it would be fun for customers who could afford to spend hundreds of dollars on genetic tests to get all dressed up in cocktail attire and then spit in little tubes. Many of these customers were acquaintances of the company’s founder, Anne Wojcicki, who happened to be married to a founder of Google.
I found a write up of one such party in New York, published in the New York Times(paywall). I’m just going to let some of these excerpts speak for themselves:
“I have a very low chance of becoming obese,” Ms. [Ivanka] Trump said. “That makes me exceedingly happy.”…
Mr. [Harvey] Weinstein, the film producer, who has acquired the Halston clothing brand, joked that DNA testing was as buzzworthy as the fashion shows taking place all week. “Now that I’m in the fashion business,” he said, “I think genetics is a natural extension.”…
Asked if [Ivanka] would ditch a suitor if he had unfavorable genetics, she said: “That’s a tough question. I’m going to say no.” She paused. “It depends on what came up though.” …
Roberto De Mitri, director of product management for a software company, was there. He stood at a computer playing with a 23andMe demonstration.
He said he and his fiancée had talked about how it was scary that someone might insist on seeing a potential mate’s DNA test before moving ahead in a relationship. But his curiosity had been piqued enough that he was spitting into a vial. After all, he said, the sharing of test results would not be that different than vetting a potential partner’s finances before forging ahead.
“You check that now,” he said, clicking on an icon. “Unless you fall completely in love.”
Some party, huh? Can’t say I’m bummed to be left off the invite list.
We’re writing a lot about DTC genetic tests this week. Even with an entire series on a subject, there’s always more that didn’t make the final cut. I’ll be in your inbox every day as we publish on the social consequences of taking these tests, privacy issues, and even a chatbot that will tell you if you should take one or not.
Additionally, on Friday, April 25, at 11 am US eastern, I’ll be on a members-only video call with our membership editor, Sam Grobart, to talk about more of what I learned while reporting this series. Got questions you’d like me to answer then, or in an issue? Send ‘em my way at firstname.lastname@example.org.
That’s all for now. Stay curious, friend! <3
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