Image from Wikimedia Commons
The Microbiome Security Agency was partially born out of the tension between the desire for an open, shared, free society and an individual’s right to privacy. In the digital age, this tension can be found across a spectrum of domains and disciplines. The simpler it is to freely share, the easier it is to accidentally (or intentionally?) share too much. And the easier it is for others to take advantage of this open sharing. And of course, a lot of times, we aren’t even aware of all the ways our shared information is being collected, analyzed or distributed.
There are no clear rules, however, about how much you should or shouldn’t share, different people have different levels of comfort. A good example of this is the American Social Security Number (SSN). The Baby Boomer generation will often go to great lengths to keep their social security number private, while Millennials seem to dole theirs out like candy to any prospective employer, credit card company, insurer, educational institution, health professional, tech company… I’m exaggerating a bit, but growing up in a world where large insurance companies are being mined for customer data it’s hard, at this point, to feel like it matters who you give those digits to.
Related personal anecdote:
In the United States, the last four digits of your nine-digit SSN are used to verify just about everything. When you call to change your internet service, for example, you verify your identification with those four digits. About a year ago, I was setting up a Fed-Ex account over the phone and my identification was verified through a third party agency. The system was multiple choice: ex. they listed off four random street addresses, I named the one I lived at five years ago. Finally, they asked me to verify the “first five” digits of my SSN. Doing the math, even as a careless Millennial, I quickly realized that these five numbers could easily be matched up with the “last four” and be, well, the whole. The interesting part, though, is that the ID verification company obviously already knew the first five. But who were these people? How did they get all this information about me in the first place? Who sold it to them? I at least want my cut.
So back to bacteria:
The study of the human microbiome is growing in popularity, and several research groups are racing to collect as many samples as possible to understand how an individual’s microbial makeup affects physical and mental health.
Many research organizations (see: uBiome and American Gut, for example) have created analysis kits and platforms for citizens to send in their own sample from their skin, feces, genitalia, etc. For a fee, (somewhere around $90-$400) you can collect your own sample, send it in along with a lot of personal information (from name, age and location, to daily habits and lifestyle choices), and get a report back of the makeup of bacteria in or on your body. You can also register for an online account to track this information over time and compare your makeup to the makeup of others. They do not give a “diagnosis” or any actionable information, but the point is to be able to track this information as the research in the field grows.
These organizations are calling this system or process “crowdsourcing” and “citizen science,” but is it really? Or are these buzz words useful in getting buy-in from an exhausted public, tired of letting corporations take their personal information without asking, and without their permission, and without their participation?
Crowdsourcing is “the process of obtaining needed services, ideas, or content by soliciting contributions from a large group of people.” This makes sense in the context of what these microbiome organizations are doing, but it is important to note that the public is not just donating samples, they are also donating funds. Maybe this is a completely ethical and effective funding method, but then how representative is the data? Is it only showing results from those who can afford it and are interested in this kind of research? What about low-income people, who likely eat differently, live in different environments, have access to different health care, etc.? (If anyone has answers to these questions please write us!)
Citizen science “is scientific research conducted, in whole or in part, by amateur or nonprofessional scientists. Formally, citizen science has been defined as ‘the systematic collection and analysis of data; development of technology; testing of natural phenomena; and the dissemination of these activities by researchers on a primarily avocational basis.’”
It’s a bit of a stretch to describe the work of these microbiome research groups as “citizen science,” right? The citizen collects the sample and can watch changes in their own makeup overtime, but that’s about it. No one pees in a cup at the doctor’s office and walks out saying they just participated in citizen science. (Or do you?!) I suppose that if you watch your composition change and new research in the field is discovered, you could infer things about your diet, health, behavior, etc. (your own “analysis”), or, in an hypothetical ideal situation, a citizen could notice a relationship between their health and microbiota that has yet to be discovered by scientists and share this with larger community.
There is something to be said about open participation even if it’s heavily managed by a few organizations. And in general, The MSA’s goals are somewhat inline with the statements put out by both of these groups:
American Gut writes:
“The open source nature of our project is important because data should be free, the only way to make best use of data from massive studies is to give it to the world and see what they can do with it. The EMP [Earth Microbiome Project], for example, uses crowd-sourced analysis to help interpret the data and provide comprehensive exploration of the full breadth of the dataset. But please be assured, your personal data will never be revealed – ever.”
And uBiome writes:
“We believe everyone should be able to explore their microbiome and discover how it is influenced by health and lifestyle. Everyone can learn about the bacteria that live on and in their bodies. We want to equip people with the tools to create their own scientific studies. We believe in the power of citizen science.”
American gut also assures it’s customers— I mean participants— that their privacy will be protected:
“Privacy is protected by de-identifying the samples on receipt, sending you your unique code, and performing all downstream data analyses only with that code…” But that, “There is a theoretical possibility that you might be identified by the information you provide (e.g. you might be the only 400-lb vegan of Kazakh descent in Wasilla), but we will take all reasonable precautions to avoid inadvertent identification of participants.”
At least they’ve considered the possibility.
The MSA’s goal is not to derail the research done by these kinds of organizations. In relation to these groups, the MSA’s goal is three part:
1. Provide a critical voice that considers the possibility of unforeseen side effects of this kind of data collection, and maintain a healthy skepticism that incorporates multiple perspectives.
2. Prototype an open, accessible, and free system where individual’s can obscure their information, if desired.
3. Explore future scenarios that investigate desired or undesired outcomes of current technologies, methodologies, and ideologies.
With thousands of paying participants, these microbiome research groups are successfully using participatory, fun, light-hearted techniques to collect, analyze, store and distribute the microbial and personal information of individuals. So the challenge is, can The MSA use these same techniques to secure or anonymize this information?