Not Everyone on 23andMe Will Get the Latest Gene Chip Updates – WIRED

Stories

If you were early to the 23andMe spit party, you’ve probably noticed that you haven’t gotten any new reports about your genes from the company in a while. Not like more recent customers, whose inboxes receive the results of such analyses on the regular—like one with more specific ancestry estimates, which came out last year, or this one, for risk of type 2 diabetes, which arrived in March.

You haven’t gotten them because 23andMe, like most other direct-to-consumer DNA companies, untangles your genetic secrets using a relatively inexpensive technology called genotyping. Instead of sequencing all 6.4 billion base pairs of DNA, it takes strategic snapshots at just a few hundred thousand locations across the genome, looking at the different, important, and changeable parts. But since scientists frequently discover new links between DNA and disease, genes and geographies, and base pairs and behaviors, 23andMe keeps changing the silicon wafer chips it uses to snag all those DNA snippets. The more recently you spat into the tube and bought your 23andMe test—it was a best seller on Prime Day—the more up-to-date your test actually is. Which means, as many 23andMe users are finding out, being an early adopter doesn’t always pay off.

23andMe doesn’t make these chips, also known as arrays—it buys them from a genetic hardware company called Illumina. Each spot on an Illumina chip registers a particular variant, a place where one person’s DNA is different from someone else’s. The more variants you want to measure, the more complex—and therefore expensive—the chip. Think of it like upgrading your laptop; it probably costs more, but it’s probably faster and does cooler stuff, too. “One reason there’s been this evolution in genotyping arrays is a drive to be more efficient in terms of how many variants you’re measuring,” says Sarah Nelson, a biostatistician at the University of Washington who studies genetic technologies.

Those increases in efficiency and complexity are great for science but not always for consumer-facing genetic companies. People inherit their genomes in chunks, not gene by gene, so chip designers have been able to find predictable relationships between variants that are all near each other on a given chromosome. Make a chip that captures information about specific variants sprinkled across different chromosomes, and you also get information about neighboring variants at no extra cost. This is called imputation.“That’s fine for research purposes,” Nelson says, “but you can’t really use imputation for variants in health reports. If you’re giving information back to an individual about a rare variant that raises their risk of disease, you would want to have it directly measured.”

That’s the federal government stance too. In late 2013, the Food and Drug Administration told 23andMe that it couldn’t offer health information anymore—at least not until the company made some changes, including ensuring that any reports about customers’ disease susceptibility relied on clinically validated variants. These are small genetic differences with good evidence for how they influence people’s health. The company had recently switched to a new chip, its fourth version, and couldn’t run the additional FDA-requested validation studies on the older chips, which Illumina was no longer producing for 23andMe.

LEARN MORE

The WIRED Guide to Personal Data

In April 2017, the company started selling new customers its FDA-approved health reports for things like Alzheimer’s, Parkinson’s, and breast cancer. But the new rules and the new chip meant customers who tested on earlier versions were out of luck. The older technology wasn’t acute enough to read those sections of their genomes, and the policy didn’t give the company enough latitude to do it anyway.

Hundreds of 23andMe customers tested on those earlier chips have pleaded with the company for some way to get access to its latest features, like the health reports and improved ancestry estimates. Many worried about whether their old data was accurate. And a public records request from WIRED revealed that some customers filed complaints alleging deceptive advertising with the Federal Trade Commission. For close to a year, the company has advised all these customers to wait. A forthcoming chip upgrade policy, 23andMe promised, would give them access to its full suite of services. The old customers’ old spit would get run on the new chips.