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Wednesday, February 6, 2019

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

By Ronald Bailey - February 06, 2019 at 04:10PM

23andMeKitEarly 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 long time happy 23andMe customer.


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