Recently 23andme, a company that’s made a name for itself by sequencing thousands of key regions in thousands of people for $99 each, signed a $60m deal with biotech company Genentech to allow access to data from their 800,000 customers. This seemed to put off people on the internet, for example an antagonistic article on gizmodo titled “Of course 23andme’s business plan has been to sell your genetic data all along.” To which I’ll argue: so what?
The main thing that seems to bother people is that a piece of them is being used for profit. That somehow their data—because it’s of the kind embedded in DNA—shouldn’t be tapped for material gain. I want to espouse on why this really doesn’t bother me at all. And unless you are immune to modern technology, why I don’t think it should bother you.
1.) You already give companies plenty of your data. This one is pretty self-explanatory, but Google, Yahoo, Twitter, et al already make plenty of money selling your data. Why is it that giving up small sections of your DNA is any worse than letting them know the location of the rash you want to get rid of? Or what route you’re taking to Maine tomorrow? Or what kind of porn you like? I’d argue this type of data could be used in a way worse way than knowing you have a few irregular polymorphisms. And trusting Google to anonymize our searches is no different than trusting 23andme to anonymize those polymorphisms. Also, to be clear: 23andme does not sequence your whole genome. It only looks at key places known to have phenotypic effects.
I also get the impression that people are personally offended since it’s their DNA. Let me be clear: there’s nothing special about your DNA. Unless you’re literally a 1 in a billion person (like her), you’re just a big mixed bag of genes like everyone else. And since your data is anonymous anyway, there’s no way for your employer/health insurance company to see it. You’re just 1 of a sample size of 800,000 used in these studies to learn how certain mutations lead to measureable changes.
Edit: here’s a new article called “Your DNA is Nothing Special“.
2.) Progress is progress. Government funding of science is not unlimited. And while the NIH has taken steps to require publications from government funding to be open after 1 year, most data taken from government grants is not released to the public anyway. Which is just like biotech and pharmaceutical companies, which invest billions of dollars to create their own data in an attempt to find the next hot technology or pill. Sure, they do it to make money, but they are creating new products that (generally) make people healthier largely with their own research funding. Edit: In fact, companies spend more money than the government on research:
Further, sometimes government funding just isn’t enough. If you come up with a great idea and want to implement it at a large scale: you have to start a company. Here’s a great example: Oxitec. I heard about this company when someone I know posted on Facebook that an evil company was going to kill all the mosquitos in the Everglades. Instead they suggested that this was a job for scientists—not some company trying to make a profit. Well, when I looked into this, it turns out Oxitec was founded by Oxford University scientists who invented a way to thwart mosquitoes from having babies (specifically: they release male mosquitoes that are able to sterilize females in the wild when they mate). Since the threat of dengue fever has become worrisome in Florida—and tests of the technology had gone well in Brazil and other countries—the state decided it was in their best interest to lower the mosquito population. The key is: this would not have been possible if these Oxford scientists hadn’t acquired investor funding to grow their product and do field testing. And this is just one example where the science needed funding to be tested at a large scale to improve our world (interesting side note: Radiolab did a fun piece on whether eliminating mosquitos would hurt the world in some way, and even the entomologists they interviewed didn’t see a problem with it. And mosquitoes do kill more people than any other organism–even other people!).
3.) Companies aren’t evil. It’s trendy to vilify companies. I can’t go a week on Facebook without seeing someone blame Monsanto for something (despite the fact they might be the only thing keeping people in the developing world from starving). Heck, as a New Yorker with a liberal slant I do plenty of company-bashing myself. But the fact of the matter is companies aren’t evil. Companies try to make money. And since when do Americans hate capitalism? And trying new technology? And jobs? 23andme came up with a novel idea, acquired seed funding, implemented the idea and gave you some cool information in the process; don’t they deserve to make money for implementing their great idea? Sure, individual people at companies could be evil, but I don’t get the impression that the founder of 23andme is looking to take over the world (and she’s not exactly hurting for money herself as the separated wife of Google founder Sergey Brin), but instead seems interested in changing it for the better.
So, if you’ve submitted your data to 23andme: feel good about it. I do. And I totally suggest getting their sequencing service myself: I used it to discover who my great, great, great grandfather was, what diseases I should be concerned about as I get older and that I’m resistant to noroviruses! For a science guy like me: that’s nerd gold!