Why giving my sequencing data to 23andme doesn’t bother me.

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:

2015/01/img_2174-1.png
(from: http://jama.jamanetwork.com/article.aspx?articleid=2089358)

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!

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4 thoughts on “Why giving my sequencing data to 23andme doesn’t bother me.

  1. Ok, so overall, I agree with your conclusion. Based on your advice, I signed up for 23andme. Today, I received an email from 23andme informing me I could “opt out” on research. But I’m not going to opt out and I’m happy my DNA is being applied to research.

    However, I don’t fully agree with your three supporting reasons:

    Point #1: “You already give data”: I think the people who are upset with 23andme are likely the same people upset with Google, Yahoo, etc. And I believe their concerns are valid. One’s personal data (whether it’s DNA or porn) can definitely be used against someone — and it’s important that society (including scientists) have checks to ensure that individual privacy is protected. Just because we sacrifice privacy each day does not support the conclusion that we should be ok with sacrificing more privacy to scientific research.

    Point #2 “progress is progress”: You, more than anyone, know that “progress is not (in itself) progress”. It’s arguable that the corporation-run society has almost the exact opposite interests as the success of our planet. One could argue that our consumption-based model will almost certainly lead to the deterioration of the earth (please see Daniel Quinn’s “Ishmael”). I’m not saying that there’s a better alternative, but you could make the case that corporations are a little bit evil… Furthermore, I could list tons of ways in which progress did not equate to progress… let us look at modern military weapons, or Nazi Germany, or the many other ways in which corporations, science, government, and religion was used for evil in the name of “progress”… Importantly, genetic research has been used for horrifically evil causes.

    Point #3: “companies aren’t evil”… for the most part, I agree. A capitalist society may be the best option (given appropriate checks)… however, as stated in my point #2 analysis, it is arguable that companies are a little bit evil (just as most people are perhaps a little bit evil — some people perhaps a lot evil)… Overall, I think it’s important to constantly challenge companies, particularly when it appears that greed and human interest elements may conflict.

    Basically, I don’t know if it’s safe to assume that the world will be more “progressive” in the future. If we are to believe that history is cyclical then it’s quite possible that McCarthyism or Soviet-type practices could return to America (or spread to more parts of the globe). In fact, if we are to believe the press, it’s possible that Google data has already been used by the US government…. and if an advantage could be gained from genetic data, I’m confident that it would be used as well… To me, it’s very important for people to speak their minds and provide checks on issues that could be dangerous… therefore, I respect the people that you’re criticizing in this post.

    Furthermore, for the record, I believe that 23andme’s goal and motives are good and that the benefits outweigh the privacy risks. But I believe this is my personal choice, I also believe that Google could be used as a tool for great evil, but that it could also be used as a tool for immense good (e.g., bringing the world together, helping people to understand each other, tearing down fences, while also greatly improving knowledge for the masses). Overall, I believe it’s important for people to be vocal about privacy matters and inform the public of the choices, reasons, and viewpoints. So, yeah, I agree with you — but I wouldn’t fault people for opting out either…

    -P

  2. Some interesting points and I agree with basically everything you said.

    1.) Yes I think you’re right. What I find amusing is when people get bent out of shape that facebook and twitter are using their data…when they’re paying nothing to fb or twitter but want to keep using it. If you don’t want facebook to use your photos: don’t put them on facebook. In this case, I was trying to argue that your anonymous, abridged DNA sequence has way less potential to violate your privacy than even a single released photo. I think people are just scared of DNA because it’s not as easy to understand as a photo.

    I forgot that they ask if you’d like your DNA to be part of their research programs. Surprised they’re willing to do so despite likely taking a hit on your sequencing as a result. Probably looking to effect good will in the company.

    2.) You’re definitely right: if a drug company discovers something before a government-funded organization then it could be withheld from the public. In either case though, a company would almost certainly need to be involved for mass production. I’ll note that I added a new graph explaining just how much funding companies provide: about half of science worldwide (which I have to say surprised me).

    And yes your points ring true about the negative history of genetic “research” (some of it wasn’t exactly science in the modern sense). I would argue that this has more to do with unethical entities (e.g. Nazis, eugenicists) using research as a tool for nefarious ends. Which is why you need government regulation and groups like the FDA to step in when things are questionable. In this case: the FDA did decide to step in since 23andme did a crappy job communicating to them. I’d argue people should have access to their health risks, but can understand the FDA’s point that uninformed people are likely to make major life changes based on the relatively limited data that this sequencing can provide. For example, most of the health risks just say something like “you have a 5% greater chance of type II diabetes.” Which is hardly something to take action over.

    A few of the large risk factors in my DNA seem like useful information as I age though. For example, I wasn’t at a higher risk than usual for stroke or heart attack. But I am strongly at risk for thromboembolism (overzealous blood clots that can act like a stroke). And I’ve since learned that if I’m on a long flight I should get up and walk around. My point: there isn’t a lot of actionable information from this abridged sequencing, but there can be.

    But to address your final point: it’s hard to imagine abridged DNA sequencing providing data for much more than health information. If you are worried about militarization of the human body, I’d be way more concerned with DARPA’s huge spending in BMIs. Which of course have their own positive benefits too (e.g. https://www.youtube.com/watch?v=LsOo3jzkhYA).

    3.) I like how you said “may be.” As jingoist Americans we like to laud capitalism, but I agree that this is hardly a fact. Not sure there’s much else to say here than what I said in point 2.

    I like your last statement and agree wholeheartedly. I might skew toward advancing science, but understand why things can’t go unbridled.

    Thanks for reading!

  3. I just thought I’d point out that anyone who is squeamish about a profit being made from information gleaned from their DNA sequence can sign up for the Personal Genome Project. Here is a Wikipedia link to that project. http://en.wikipedia.org/wiki/Personal_Genome_Project. Your sequence will be uploaded to GenBank and become available to the entire world free of charge. There is no guarantee that some smart person shuffling through your bases cannot have an “Ah-ha!!” moment and subsequently get rich – but at least everyone will have an equal chance.

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