D. Joy Riley, M.D., M.A.
Executive Director
More than a decade ago—in a different time and a different place—a neighbor offered me a box of stuff he had bought as part of a lot at some estate sale. He needed to get rid of no small amount of “stuff,” so he gave me that box of tarnished silverware and odds and ends. I took it home and spent a couple of days cleaning it. We were already planning a yard sale, and so I placed the now-cleaned items I did not need from the neighbor’s box in the sale. Imagine his surprise when he saw me selling what he had given me! The proceeds went elsewhere, although my neighbor may not have understood that.
The drug development that 23andMe is engaging in is both the same as and different from my selling what our neighbor had given me. 23andMe is a direct-to-consumer genetics testing company. Customers buy the kits and register them, collect their saliva into the tubes provided, and send their DNA-bearing saliva to the lab via the sticker provided. How many customers have done this? The New Scientist reports that 23andMe has sold more than 10 million DNA testing kits. Moreover, Jessica Hamzelou writes, “More than 80 per cent of their customers have agreed to their data being used by the company for research and by scientists trying to understand the causes of diseases and how best to treat them.”
Therefore, it should come as no surprise that from all that data comes something new. 23andMe joined a lucrative collaboration (to the tune of $300 million) with pharmaceutical giant GlaxoSmithKline in 2018. Now, 23andMe has sold the rights for a potential new drug — an antibody to be used in inflammatory diseases — it has developed to a Spanish drug company. “This is a seminal moment for 23andMe,” said Emily Drabant Conley, vice president of business development. “We’ve now gone from database to discovery to developing a drug.” This, apparently, is only the beginning of such use of the data collected.
23andMe customers can expect no remuneration for their contribution to this research. New Scientist reports that Tim Frayling, a University of Exeter molecular geneticist, “questions whether it is fair for the company to financially profit from genetic data that its customers volunteered for medical research.”
It is intriguing that with the customers paying fees for their samples to be collected and used, and the pharmaceutical houses paying mega-bucks for either shares in the company or rights to drug development, that 23andMe is laying off workers. This month, it was announced that 14% of its total workforce is being laid off; that is roughly 100 people, according to PCmag.
If “One man’s trash is another’s treasure,” 23andMe seems to know how to convert it. Sharing the proceeds, however, is a whole different story.
A little bit of history:
23andMe was started in 2006 by Linda Avey, Paul Cusenza, and Anne Wojcicki, and its history is tied rather tightly to Google. Anne Wojcicki was married to Google co-founder Sergey Brin from 2007-2015. In 2007, Brin loaned 23andMe $2.6 million; this was repaid after Google provided the start-up $3.9 million in May of the same year. In June, 2009, it was announced that 23and Me had raised more money from Google: this time, Google provided $2.6 million, and Brin, $10 million for what constituted a Series B funding round.