“Changing how we do science”: An interview with Madeleine Ball of Open Humans

We recently released a set of Seeq features that allow you to contribute your genome to different projects. One such project is Open Humans. We interviewed Open Humans co-founder Madeleine Ball about her participant-centered approach to research; below is an edited version of this interview.

Madeleine Ball, Open Humans co-founder

What is Open Humans, and why should Seeq users be interested in contributing to it?

Open Humans is an online nonprofit community where you can contribute yourself — and your data — to research. Our approach centers on you: you aggregate data from various sources, and you have ongoing control of how you share it. You can choose to make some data public so people can access it without needing to ask your permission. You can also share data directly with specific projects you join, and we’ll share new opportunities to contribute.

Part of what makes Open Humans special is our strong ethos of participant empowerment. Most studies don’t give participants ongoing control over their data — or even access to it! In Open Humans, you’re in charge: you have access and control of your data within Open Humans, and we work to help research studies (like Seeq!) share data with Open Humans members. We also believe in citizen science: researchers can create projects in Open Humans, using on-site and API features to work with members — and so can anyone else!

Can you tell us a bit about the studies on Open Humans that you think are most interesting?

One of the things I love about Open Humans is how much I’ve learned about other fields beyond genomics. The Keeping Pace study, for example, uses donations of GPS data to understand how features in our urban and suburban environments combine with other factors (like seasons!) to affect mobility and activity.

I also love the Pokemon Go study run by Alex Biel and Eric Hekler — the game went viral last summer, and Alex was inspired by it. With Eric’s mentorship, Alex literally pulled the study together and ran a pilot in a matter of weeks. That is crazy fast. This mostly speaks to Alex’s focus and hard work, but it also demonstrates how easy Open Humans is to use. But there’s one more thing to love about this: the study used a data source created by a volunteer citizen scientist! James Turner created an open source iOS app that exports “Health” app data (aka HealthKit) to Open Humans. Alex’s academic research wouldn’t have been possible without James’s “citizen science” contribution.

What do users of Open Humans get back from their participation?

Open Humans: “a community built on principles of open source and citizen science”.

People who join Open Humans are changing how we do science. They’re making themselves a resource that narrows the divide between “researcher” and “participant”, and growing a community built on principles of open source and citizen science. Individual studies can also have their own rewards — they might return interesting new data, or new insights into existing data.

We want research to be something rewarding that you want to keep contributing to. We have a newsletter, blog, and Facebook group where we share new projects, updates, and interviews, as well as online forums where researchers can talk to participants — and participants can talk to each other.

Personally, what motivated you to start Open Humans?

I started Open Humans because I saw an opportunity to make the world a better place. I’ve always been in love with science, learning, and sharing knowledge. More recently, in my position as Director of Research at the Harvard Personal Genome Project, I had firsthand experience of some very real problems with how we’re currently doing science.

Specifically, the research community has failed to bring “open” values to the “humans” in human subjects research. Research subjects are asked to allow researchers to generate data about them — and share it with other researchers! — but not given access to it themselves. In a world where data is increasingly digital and can be easily returned to participants, this makes no sense. It’s also a citizen science wasteland. Regulations on conducting human subjects research make it enormously difficult for citizen scientists to contribute in meaningful ways.

Open Humans exists because I have a vision for solving this — a combination of community, technology, and advocacy. I think combining these is key. And the solution needs to acknowledge the complexities and costs of performing research. It’s not enough to complain about the current system: we need to build and share a better approach.

In your best-case scenario, how do you imagine Open Humans in five years?

I imagine Open Humans as a community that reaches “critical mass”, with an ever-increasing number of projects that benefit from this new way of doing research! This happens when we reach a tipping point, because it’s a feedback loop: as more members join, more researchers will see opportunities for science. And as more studies use Open Humans, more members see compelling projects to join. We’re on track — it’s slower than I’d like, studies can be surprisingly slow to roll out! — but we have a growing pipeline of diverse projects that will deploy on Open Humans. Once we take off, we’ll have proven that this new way of doing research is a win-win: it empowers participants AND advances science. Each member that joins brings us closer to taking off!