GENEWATCH
 
EDITOR'S NOTE
By Samuel W. Anderson
 

from GeneWatch 28-3 | Oct-Dec 2015

 

Five years ago I stepped out of a party to take an unexpected call from Anne Wojcicki, co-founder and CEO of 23andMe.

I had tried for a couple of months to land an interview with Anne. Her company was probably the best known consumer genetic testing company at the time, and remains so today - though it, and the consumer genomics landscape in general, has changed quite a bit since then. I knew she would be an ambitious target, given that she was probably pretty busy with the small matter of running a multimillion-dollar startup marketing a very new product in a regulatory environment with a very uncertain future. I had more or less given up on the interview when I got the call.

The interview was very brief and didn't make a particularly electrifying read, but I got another shot two years later, for our "Genetics in Twenty Years" issue (one of our best, by the way). I asked her: "Where do you see consumer genomics in 20 years?" Her answer was very much in line with how the other contributors had responded when asked to look two decades into the future: "Twenty years is an eternity in this business. I feel like it would be sci-fi even if we were talking three to five years."

Well, it has been three to five years, and consumer genomics really has not entered sci-fi territory. In fact, you might say it has stalled out. As Alexis Carere points out in this issue, the direct-to-consumer (DTC) genetic testing experience offered by 23andMe and a few other companies back in 2012 no longer exists. A year after our interview, FDA blocked 23andMe and other companies from returning health-related genetic testing results directly to consumers. Some companies shifted their model to offer their tests through doctors instead of directly with consumers. 23andMe turned its attention toward ancestry testing, and "many DTC genetic testing companies have since closed up shop altogether."

But things are heating up again. New gene-editing techniques like CRISPR bring us closer to the advent of human gene engineering (see Steven Salzberg's article). The European Union is discussing new regulation of DTC genetic testing (see Helen Wallace's article). And just a couple of months ago, 23andMe announced that they will begin offering health-related genetic testing again - more limited than before, but with FDA's blessing. "Part of what we tried to do over the last two years is take advantage of being off the market to redesign the entire experience," Anne Wojcicki told the New York Times. 

What they've also been doing in that time: Building a new business plan. The company had been sitting on the genetic information of over a million customers, most of whom had agreed to participate in research - and in doing so, automatically consented to having their genome sequenced. All the time 23andMe was marketing direct-to-consumer genetic tests for health and ancestry, they were amassing a database far more valuable than the $99 or $199 each customer had paid. This year 23andMe made big deals with Pfizer, Genentech, and other companies to start using that mountain of data to develop new drugs. The Forbes headline on the Genentech deal begins: "Surprise!"

It's hard to imagine what we will be talking about the next time GeneWatch publishes an issue focusing on consumer genomics. A lot can change in three to five years.

 

Samuel Anderson is Editor of GeneWatch.


 
 
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