The New York Times Condescends to Direct-to-Consumer Genetic Testing Fans

If Times editors don't want to learn about their genetics, then they simply shouldn't take the tests.

23andMe

Early adopters of new technologies are generally savvy to the fact that what they are buying is a work in progress. They are eager to try out a new technology for the fun of learning a bit about how it works and getting ahead of the curve as it is perfected. This process of social learning is apparently lost on the busybody editors of The New York Times.

On February 1, the editorial board ran an opinion piece warning the paper's readers that the genetic screening test results provided by direct-to-consumer (DTC) genetic testing company 23andMe were not necessarily "clinically useful." Well, whoever said that the test results were? Certainly not the company, which explicitly states, "Our tests do not diagnose any health conditions." [Emphasis theirs]

To illustrate the alleged confusing uselessness of 23andMe's testing, the Times editors then go through a long disquisition of how the company tests for only three variants in the BRCA1/2 genes that are associated with much higher risk of breast cancer. The editors correctly point out that there are many other mutations in the BRCA1/2 genes that increase the risk for breast cancer for which the company does not test.

Guess who else tells users of the limitations of the company's BRCA1/2 screening tests? 23andMe. In my case, 23andMe reports:

Ronald, you do not have the three genetic variants we tested.

However, more than 1,000 variants in the BRCA1 and BRCA2 genes are known to increase cancer risk, so you could still have a variant not included in this test. [Again, emphasis theirs] In addition, most cases of male breast cancer and prostate cancer are not caused by inherited variants, so men without a variant are still at risk of developing these cancers. It's important to continue with any cancer screenings your healthcare provider recommends.

Folks who pony up $169 to companies like 23andMe are curious about how genetic testing works and what they might learn. Way back in 2011, the Times itself reported the results of a New England Journal of Medicine study that "found that people are not exactly desperate to be protected from information about their own bodies. Most people say they'll pay for genetic tests even if the predictions are sometimes wrong, and most people don't seem to be traumatized even when they receive bad news." Later research bolsters the conclusion that users of genetic testing understand and handle what the tests tell them.

In a letter to the editor, 23andMe CEO Anne Wojcicki strikes back against the Times' condescension. She points out that many customers who would otherwise not qualify for or afford BRCA screening tests have benefited through finding out their status.

But more importantly, Wojcicki argues, "We believe that consumers can learn about genetic information without the help of a medical professional, and we have the data to support that claim—specifically, user comprehension studies showing greater than 90 percent understanding of the concepts in our reports, including that a 0 variant or 'negative' result does not mean forgoing other recommended screenings." She adds, "There are significant opportunities for all of us to have better health care, prevent disease and live better lives—but that comes from individuals actually being empowered to take more control of their health."

Early adopters of DTC genetic testing are somewhat like the purchasers of Apple IIs who bored their friends by extolling the glories of Usenet newsgroups. By jumping into new technology markets early on, neophytes help companies refine and improve their products so that they become cheaper and more user friendly over time. That is exactly what is happening in genetics testing now. For example, I am awaiting the results of a whole genome sequencing I purchased on sale for $200 from Veritas Genetics.

So back off Times editors! Leave us amateur genetics nerds alone!

Disclosure: Just in case it's not clear, I am a longtime happy 23andMe customer.

Comments

[Eddy]

The Times editors did their genetics tests, and it showed they were all sons of bitches.

[lap83]

With just a question mark on the paternal side

[Diane Reynolds (Paul.)]

That was genital testing.

[NashTiger]

noice

[C. S. P. Schofield]

The New York Times exists in a cultural bubble; one that is growing more opaque by the year. While they imagine themselves to be a Great Cosmopolitan Newspaper, they are in fact a provincial hack-rag. Their significance has and continues to be exaggerated by a readership far more influenced by past glories that by present merit.

They may, occasionally , appear to understand public enthusiasm for phenomena outside their own narrow tastes, but this is usually because they have been beaten over the head with evidence that if they follow their personal instincts on those subject, they will make themselves look foolish. When it comes to entirely new technology, finds, and fashions they have no such warnings, and their innate provicialism comes out.

[Diane Reynolds (Paul.)]

Has the Internet been overhyped?

Even as cyberspace is being touted as the hippest place to congregate since the original Woodstock, some experts now contend that estimates of the number of people actively using the Internet web of computer networks may be grossly exaggerated.

New York Times, 1994.

[C. S. P. Schofield]

Precisely!

[Mr. Flanders]

"And for businesses and policy makers who are planning for a digital future where the Internet delivers tens of millions of interactive users freely sending and receiving all sorts of information over the Internet, the rise of "fire walls," or security barriers, is a significant impediment. Mike Schwartz, associate professor of computer science at the University of Colorado at Boulder, said a 1992 survey of the Internet found that an estimated 35 percent of all Internet computers were barricaded behind fire walls."

I am dying. Wow.

[emmanuel]

Do people actually read the New York Times? I don't know anyone that reads a newspaper.

[BYODB]

Another, in this case real, reason not to take the tests: The government will demand your genetic data, and the company will comply no questions asked.

[BYODB]

More on topic though, while a genetic test won't diagnose a health problem is can predict future health problems. Basically, they're lying through their teeth and willfully conflating things that aren't the same to make their pathetic claims here.

By the logic in the Times article, you shouldn't get preventative medical care because it doesn't necessarily diagnose any health problems. It's absurd logic.

[Drave Robber]

The rumor is they already complied. (warning: Buzzfeed link)

[Mr. Flanders]

This. Its exactly the reason I won't get genetic testing. I don't trust companies to keep my genetic info private for my remainder of time on Earth.

[emmanuel]

The government can demand all it wants. I have NEVER used my real name while on the internet. If I should ever buy a genetic test I would not use my real name then either.

[Longtobefree]

Say what?
The unregistered lobbyist for the progressives is against having everyone's DNA in a data base the can be subpoenaed, and confiscated?
I call bullshit.

[Hank Phillips]

A typical book on population genetics starts with 70 pages transforming difference equations into differential equations, then Poissons the reader half to death with weird derivations, shortcuts, "simplifying" approximations and whatnot before getting into highly technical discussions about genetics. I'm sure the NYT scribblers are wearily familiar with all this stuff and in a position to lecture The Great Unwashed about the dangers of not consulting their advertisers first.

[Echospinner]

I sent one of those in. Found out my ancestors came from Newfoundland, Labrador, the Dalmatian coast, and one great grandfather was a shephard in Germany. Holy Shit I'm a dog!

[Eddy]

Good one.

Were any ancestors from Greater Denmark? Pomerania?

[See Double You]

That was great, Dane.

[Deconstructed Potato]

So the NYT gives out its usual list of condescending talking points for morons who can repeat them at each other and sound smart at dinner parties with other cosmo dunces who will all change their tune immediately once the right publications publish op-eds and "science" pieces saying how wonderful it is for whatever reason. I guess it's still trendy to trash it given some of those "alt-right" people allegedly used 23andme to prove they were ancient nordic aryan j?tnar or something (a handful of wackjobs that someone dug up for clickbait?).

[Eddy]

A Norse is a Norse, of course, of course.

[Benitacanova]

Watching muslims find out they're part jewish is priceless.

[mattcid]

I turned out to be a Plymouth Rock blue blood! But seriously isn't the big fear with these things that paternity will be questioned for a lot of folks?

[Colossal Douchebag]

The editors of The New York Times can go fuck themselves, hard.

[buybuydandavis]

With a rusty pipe.

[gah87]

These tests can, however, tell the world that one is mostly not a native American.

[NoVaNick]

Science is a tool of the patriarchy (unless it's climate science)

[Mr. Flanders]

The Democratic party is the party of science (unless its science about the wage gap)

[NoVaNick]

I've done 23andMe and ancestry. I also have a background in molecular biology, so I knew to interpret the disease risks with a grain of salt-other than for some well established genetic diseases like cystic fibrosis, nobody really knows yet which genes contribute and how much they do to say heart disease risk, cancer, or stroke.

[Paloma]

What's that about My Body My Choice again?

[buybuydandavis]

Shorter: The New York Times Condescends

Of course they do. Do they do anything else?

[NashTiger]

The New York Times condescends

shocked, shocked

[girleeee]

Your uterus your choice but all other body parts subject to regulations and restrictions

[JonFrum]

Every psychological trait yet tested - of many - have shown genetic effects. And the most important psychological trait of all - intelligence - is the trait with the biggest genetic contribution. This is probably what the NY Times is afraid. Not testing for cancer genes right now, but evidence that some people are just better suited to be successful in life the day they're born. And no - socio-economic status has very little effect on success in life, once you subract out the genetic contribution.

[buybuydandavis]

WrongThinker!

[NashTiger]

The New York Times Editorial Board should welcome the testing, to know exactly how much to hate people for being white and shut them up - Sarah Jeong, in dissent

[buybuydandavis]

They New York Times needs more Progressive thinkers like Sarah Jeong.

And I'm sure they will get them.

[UnrepentantCurmudgeon]

Yes, people can be stupid about 23andMe results. There's an ad showing a Hispanic-looking fellow talking about how he has found new pride in learning about his Native American heritage. Turns out he's descended from the Chihuahua tribe in Mexico that part of emigrated to what is now the United States. Native American? Even if I bought it that there is such a thing, I don't think so. But he's just as entitled to his self-serving delusions as anyone else I suppose.

[ejhickey]

Is there a possibility the results of this genetic testing could be hacked or misused ?

[Myk]

I did 23 as part of a study (no charge). It actually was clinically significant. Not their results but my raw data. There's some reasons to question my diagnosis that has switched back and forth. I learned enough to read other studies to learn the genetic differences, compared to my raw data, I'm pretty sure genetically I have the correct diagnosis. And I think I know which side of the family it came from.

Ancestry: I got to destroy my family's dream that we're Cherokee. That should've been easily done by my genealogy family. After getting my results I searched on the internet to figure out the one my lying sack of great great great grandma was claiming was Cherokee had a UK name and immigrant records.

Their trait reports have been way off. I hope their health reports aren't, I've only been flagged to go blind like my grandmother.

Worried about genetic theft??? I've thrown out 500,000 DNA samples called cigarette butts, countless pairs of underwear and blood soaked bandages. Not to mention the extra vials of blood nurses take that I'm sure are sold on Ebay for cloning sick people for Big Pharma to profit from.
Geez, paranoid much?

[buybuydandavis]

Promethease for analyzing your raw data versus medical impact.

The generally most medically significant thing to get out of your raw data is if you have non-functioning enzymes involved in drug metabolism.

I have a non-functioning variant of cyp2d6. There is huge population variation, from non-functioning to ultra metabolizing. 25% of clinically significant drugs are metabolized with cyp2d6. It's simply incompetent to prescribe those medicines without testing cyp2d6 status first.

[Myk]

Since I'm definitely diagnosed with IBD all I had to do was search for the different genes and variants in studies on the genetic differences between Crohn's Disease and Ulcerative Colitis and disease traits to what is in my raw data. It was quite simple and seemed to fit accurately.