Let’s discuss the personal information of the future – medical information. Not just any information – information about your DNA. (Please remember we don’t say personally identifiable information here at Big Data and the Law.)
Miinome, a Minneapolis start-up is, as described in this article in Minnesota Business:
… developing a platform through which its customers will eventually be able to cash in on the value of their DNA by selling their genetic data to marketers and researchers….
Before we get into what a creepy idea this is, let’s look at one good thing about this proposal.
Currently we are exchanging our personal information for access to our economic and social systems as presently constructed. For example, as we discussed in a previous post, it might now be necessary to participate in social media to have timely to information that might affect our investments.
Although our personal information has value (lots of value apparently), that value is not recognized when it is exchanged solely for participation in those economic and social systems. We do this is because we have no choice.
In contrast, what’s interesting (good?) about Miinome is that the people there have clearly stated that our genetic data has value. Their business model is premised on the idea that the value of that information can be recognized in an exchange for something else. Most importantly, that value can be quantified and what is received in exchange for our genetic data can, in theory, be something more than the price of participation in today’s economic and social systems.
We want to show our members the value of their information, because we believe it has significant untapped value. This value can take many forms, like monetary, cost savings, or wellness. This data is basically static [and] doesn’t change over time, unlike the demographic data being collected about you.
The quote is a little out of context as will be evident further on here.
Now let’s get into the shortcomings of this whole thing.
1. Notwithstanding Mr. Saarinen’s happy talk about receiving fair value for our genetic data (whatever fair value might be), I think that is fated to end. It will end when that genetic data becomes a requirement for participation is our economic and social systems as is our other personal information at present.
Is it crazy to think that could happen? Maybe. But read the articles this post links to. One thing you’ll see in them is that the cost of generating the subject genetic data is falling fast. When the cost barrier falls on anything, new uses are considered. By the way, if you look at Miinome’s business plan, they aren’t suggesting a full sequencing. So factor that into your thinking about cost.
As an example of such other uses, consider security concerns. If genetic data is the ultimate in personal identification, isn’t it logical that genetic data will overtake the social security number as the data of choice in securing on-line financial transactions?
2. Speaking of security, when it comes to my genetic data I’d like to have some. This is where I show how that previous quote from Mr. Saarinen is out of context. The full quote is:
Why is it important for consumers to control how their genetic information is used?
Is it important for people to control their financial information? We want to show our members the value of their information, because we believe it has significant untapped value. This value can take many forms, like monetary, cost savings, or wellness. This data is basically static [and] doesn’t change over time, unlike the demographic data being collected about you. So once it’s out in the open, it’s hard to take it back for privacy reasons. You can’t change it like a credit card number.
He makes a good point. “…once it’s out in the open, it’s hard to take it back for privacy reasons.” So maybe he should be explaining why Miinome’s data security will be better than anybody else’s data security. Also, what about the data security of all those that get our genetic data through Miinome in exchange for whatever we get in return? And “once it’s out in the open” won’t we lose the economic opportunity of selling our genetic data?
Daniela Hernandez notes in this article in Wired:
If Miinome can build a secure network and gain the trust of consumers beyond just early adopters, they might actually have an interesting business model.
If Miinome is able to build a network that is secure enough to gain the trust of consumers with respect to their genetic data, Miinome should drop its current business model and go into the network security business.
Finally, let’s not get into the de-identification debate here. I don’t believe in it. Look here for support for my skepticism.
3. Putting the two foregoing points together, the essence of what is wrong with this concept is a fundamental premise about our genetic data, as noted in this quote from Ms. Hernandez’ article:
The company, which is launching in closed beta this spring, will essentially be a repository and brokerage firm for your genetic information. It will allow its members to choose what academic institutions, pharmaceutical companies or marketing firms can take a peek at which of their genes. (Everything will be opt-in and Miinome business partners won’t get their hands on raw genetic data, Saarinen says.)
The same concern in this quote from an article on Datanami:
The question then becomes: What do you do with that information? In Miinome’s marketplace model, individuals will retain total control over their DNA data. The company will allow members to share their data with philanthropic organizations, such as those looking for cures to diseases like cancer. Or they could opt to share their data with a drug company to get a discount on blood pressure medicine.
The implication is that, but for Miinome, we won’t (or don’t) have control over our genetic data. We wouldn’t we? Why shouldn’t we? I get the part where they presume to make sharing your genetic data secure, but does our genetic data magically become ours because we give it Miinome?
As I said, this whole thing is creepy and not just a little bit scary. I hope we don’t fall for the idea of a business that the value of our genetic data is anything like this:
If, for example, you’re genetically prone to male pattern baldness, Miinome’s algorithm might be able to infer that environmental factors like stress or smoking could be contributing or accelerating your hair loss from your social media posts. If you choose to broadcast all of that information to Miinome’s business partners, they could show you very targeted ads for Propecia or nicotine patches, meditation, yoga or spa services.
I’m not giving up my genetic data in exchange for information about spa services. That’s what I give my personal information to Google for.