2015 is still young but we have our first “big-data-scandal”. 23andme, a company offering to analyze your DNA for 99 USD, has announced its first big deals with the biotech sector, giving 3rd parties access to their growing pool of data for a fee.

Now before I continue I should add that I have a 23andme profile – I wrote about it last year – which I paid 99 USD for (but didn’t add a subscription for more than the included year of analyses). I don’t own any stock in 23andme (or other companies for that matter) and I don’t get paid by anyone for writing this.

23andme’s announcement, outlined in a quite reasonable article on Forbes, was received by many of the usual suspects in a very predictable way. The article I saw linked most was published on Gizmodo and titled “Of Course 23andMe’s Plan Has Been to Sell Your Genetic Data All Along“. Already feeling the warm comfort of someone trying to scare you? Let’s have a look at the article:

Since 23andMe started in 2006, it’s convinced 800,000 customers to hand over their DNA, one vial of spit at a time. Personal DNA reports are the consumer-facing side of the business, and that’s the one we’re most familiar with. It all seems friendly and fun with a candy-colored logo and quirky reports that include the genetic variant for asparagus pee. But 23andMe wasn’t going to find a big business by selling spit kits at the cut rate of $99. Instead, it’s always been about enticing customers to hand over their DNA sequences along with details of their lives in a questionnaire to build a giant database—one that academic researchers and biotech companies alike are, well, salivating over.

I won’t even go into the torrent of puns the article showers its readers with but its choice of words: “convinced customers to hand over”, “seems friendly and fun”, “enticing to hand over”. 23andme’s customers are portrayed as stupid, unreflected victims of some kind of scam, the company somehow cheating them into handing over “their data” to sell it to the highest bidder.

I won’t go into the fundamental falsehood of owning data here, I’ll save that for a later article, but let’s see if 23andme did cheat anyone. So how does 23andme’s business model work? Quoting myself:

For a few months now I have been a customer at 23andme who offer genetic testing for a rather low price (about 100 US$). Their business model is to sell genetic testing at a loss but to use all the available data for their own scientific analyses: You might have heard about their patent for a product helping parents to select the traits of their offspring (that product is obviously not yet available and there is a lot of debate on whether it would be ethical to offer or use it, a debate we are not going to look at for this blog post).

You get access to quite a lot of information about your genome as well as a download of your own SNPs in a plaintext form for your own analysis or backup. Analyzing DNA isn’t cheap and 23andme doesn’t get to make any money selling their kits for that price (probably even below cost). Their money is in building a big pool of data to analyze and derive more – marketable – knowledge from. Are they forcing you do participate in that?

In fact they do not. Before 23andme gives others access to the data you “handed over”, you have to explicity consent to it. It looks like this:

You can also revoke your consent at any time. Before being able to consent you are presented with a very clearly written document outlining exactly what they intend to do, which data goes where, etc. Here’s a quick snippet of a relevant part:

Looking at other services’ EULA or TOS this is rather plain English. You can actually understand what it is they are trying to do. And you can use the whole service without giving that form of general consent. In that case 23andme might ask you directly if you consent providing data to a specific study which you can agree or not agree to. 23andme is actually quite a great example how to handle very personal, sensitive data with great care and how to make sure the individuals concerned consent to the data processing.

The Forbes article actually gets it right:

People who have bought 23andMe kits and agreed to donate their data to research (that’s about 600,000 of the company’s 800,000 customers) automatically consent for 23andMe to sequence their genomes. 23andMe says that it is also able to share anonymous and pooled data about their self-reported health traits without asking. But Genentech wants even more: it wants to look at health and genetic data on an anonymous but individual basis. For that reason, the company will have to ask customers if they want to enter the study.

But that didn’t seem to be scandalous enough for many publications who seem unable to understand that people are actually willing to contribute data to scientific studies willingly. I would have understood urging people to contribute data to open data science projects such as openSNP (you can look at my genome on openSNP as well) but scandalizing a company doing what it said it was doing with the data people contributed willingly and explicitly consenting is basically FUD.

It’s actually sad to see these kinds of articles popping up whenever some service based on data makes money because it overlays and replaces reasonable and important debates around the data at hand. We could ask how exactly consent online can and should work. We could ask if algorithms doing analyses should be more transparent. How companies should explain their business plans. How we can build common data pools to enable science independent of a few big corporations monopolizing the knowledge and future of mankind. Or we can write ill-informed paternalistic fluff-pieces generating a lot of outrage and no lasting value. The latter obviously getting way more shares and clicks and ad-revenue.

The discussions of how our social and legal norms and concepts should apply and adapt to the digital sphere are only just starting. And we won’t get any results by writing articles like Gizmodo’s which could be summarized by “other people are doing something I don’t like, they are doing it wrong and it should be banned”.

Yes, people make money off of you. That can make you uncomfortable (and in my opinion it actually should) but that is not a question about data but about the way we organize our economy. Just an idea: Maybe capitalism isn’t as great as some say?

Title Photo by opensourceway

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