John Wilbanks runs Consent to Research, an initiative to build a commons from self-donated personal health data that will provide a large pool of medical data for research and also allow individuals to contribute to scientific innovation. On stage at TEDGlobal, Wilbanks discussed privacy, consent, control through sharing, and the power of a “small number of unreasonable people.” He recently shared his insights with Hannah Piercey via writing.
HP: How do you define “radical openness” in respect to your work?
JW: It’s about adopting openness as a default philosophy. Now we have to make an argument that photographs, data, music, or even the words in this article should be open. For me everything I do is open. It’s all on the web for free, legally and economically. I start from the position that what I do should be open and require a compelling argument to the contrary in order for it to be enclosed.
HP: What would a radically open data ecosystem look like?
JW: Much like the messy, sprawling, chaotic Web but organized by common standards in formats, languages, and transfer protocols. But in other ways it would be different, because the web is dominated by human-generated content, while the data ecosystem is dominated by machine-generated content. A lot of that ecosystem will simply be databases into which sensors and bots unspool epic columns of numbers. Government, health, economic, traffic, and weather data currently closed flows into it in real time.
HP: Data is often in traditional silos of hierarchical institutions where it challenging to effectively cultivate an open ethos. Do you believe it’s feasible to “hack” our current institutions or is a wider cultural shift needed?
JW: It will be hard until many of those institutions either fall or are remade, like the auto industry. The opportunity is to go through individuals. We have the power as individuals to collect data now in ways that used to only be available to large institutions. That is going to accelerate. If enough individuals participate in an open ecosystem then we don’t need everyone to buy in. It will have enough data to generate real value, both socially and economically. That’s a cultural shift but I’m not sure it needs to be a “wide” shift.
HP: While data transparency is crucial, in many ways it is only a starting point. What must happen to information to make it accessible on a wide-scale? How do you connect with people using data?
JW: Accessibility of data doesn’t mean awesome things will happen. There are examples from the developing world where the digitization of public records led to the disenfranchisement of some of the poorest residents, who didn’t even know the program existed, much less that they needed to file digital claims to their land. Openness is just a system setting. It’s not an answer. It needs to be surrounded by a social contract about what it means to live in a world filled with data that can be accessed.
We have to make some tough choices about the levels of granularity we want for this information in the public spaces, and create systems that let individuals choose at what level they want to make their data available. We have to get serious about what it means to discriminate against people based on their data. Radical openness isn’t a solution; it’s just a mindset. And if we implement the mindset outside the context of what gets done with the data, we run the real risk of screwing people over. Those with the technical or social power to use data cannot have free license to exploit those who don’t understand the data world. We must have some systems in place to create trust, and penalize those who violate a social contract around data. Those who want to use data will use it. The question is how we treat that usage socially. On a boring technical level, we need to continue the movement towards linked open data to make sure that the languages and protocols and all the plumbing works.
HP: What inspiration do you draw from digital culture and how does that translate to open data platforms?
JW: Digital cameras, broadband, and cheap storage means that everyone’s a photographer, with equipment that used to be restricted to professionals. Not that many people use Creative Commons licenses, but since the overall sample size of photographers is so large, even a small number of radically open photographers means we have 300,000,000 plus photos under open licenses at one website. That on its own is a massive shift that only took a small number of people to pull it off. Asymmetry is an essential feature of these kinds of systems – small groups of people changing the world.
HP: What opportunities for innovation in your field does disseminating the control of data create?
JW: I’d change “disseminating” to “loosening” because control never goes away. Sharing things is a form of control. What can change in the health space is the change away from a world where we start with a hypothesis and then generate data to figure out if it’s true or not. That worked well in the old days when data was scarce and expensive. Now we can start with the data and let it help us form a suite of hypotheses, and then evaluate those hypotheses rapidly. It’s a very simple tweak to the scientific method – an evolution in the way we form the hypothesis, and in the way we prioritize the hypothetical space. But it’s a tweak that could have massive impact, because it means that suddenly we’re not restricting our ideas to the ones we were taught. We’re allowing the data to tell us what might be happening, and then we can bring the human strengths to bear on figuring out which hypotheses to test first, which ones fit the known biology the best.
HP: What are the recent projects or developments that you are most excited about?
JW: I’m most excited about data democratization, or the idea that data about me should be accessible to me. I deserve at least a copy of what you know about me, and then I get to decide what to do with it. Whether it’s the “blue button” for downloading health records or its green counterpart in energy, or the Google Data Liberation Front, or any number of other efforts, what matters is the emerging idea that data about me is mine. That I deserve at least a copy of what you know about me, and then I get to decide what to do with it. That’s the movement that leads to radical openness. It has to come from us, not from above. And for that to happen, we have to have a right to the information collected about us.