Ever wondered how your genome could be related to your social intelligence? Or which foods might affect your sleep patterns? Genomera is an online platform that’s making it easy for community members to transform these kinds of questions into crowd-sourced health studies.

As CEO of Genomera, Greg Biggers has spent a lot of time thinking about the design and psychology of community participation. And he's placing bets that online community can make meaningful progress where traditional health science can be cumbersome and slow.

Let’s start with an overview of what Genomera is trying to do.

Sure. We have two big goals. One of them is to more evenly distribute and democratize health sciences. We want to give any individual a voice in health sciences and let them influence or actually set the agenda, so they can use evidence-based science to find answers to the questions that matter most to them.

Goal number two, which is a bit related to that, is that we want to bring the process of doing health science studies and clinical trials into the Internet age. The scale of these trials should not just be through this tiny little bottleneck that Pharma spends lots of money on. We want to break that open and bring massive scale to health science.

In some ways, we want to be to health studies what something like WordPress or Tumblr is to a blog. We're the infrastructure that makes it possible, but the actual work is because the people are doing it.

What kinds of people do you see joining Genomera?
We’re still in the early stages of our online product and community. I think we'll see this change a little bit over time, but at this point, the people coming right now, broadly speaking, are coming from two different places.

1) People who have a health problem that they want to solve. They’re either very curious, or they feel they've finally found a place where they think they can get that done.

2) People who have some relational connection to the first group. They were drawn to Genomera because an existing user said, "Hey, we need more people to help us do this. You seem to care about this, too. Can you come join us?"

Much of the science happening at Genomera is being driven by what professionals would call “lay scientists.” We're serving some classically trained scientists as well, but we're much more open about who we think can be a "scientist."

We do see some people express reluctance to put on that mantle of scientist, but we work hard to help them overcome some of that reluctance because we think it's artificial. For the Genomera movement to really work, we need people to self‑identify as ones who are engaging in credible science together. So that’s a very, very important to us, and it’s a barrier that's beginning to fall.

Do you think that barrier is reinforced by the world at large? For example, have you met with any criticism from the more traditional scientific community?
The very first press about Genomera was actually in a very traditional scientific journal. It was "Nature: Medicine," and when the journalist from "Nature: Medicine" contacted us about doing this story, we tried to talk him out of it, because we were sure that Genomera was not ready for scrutiny from that audience yet. We thought that eventually we would be, but right then, the first time we had done this, we did not think was the time.

I think we were worried about being perceived as just another Internet upstart, upending what we thought they cared about. We thought they would feel threatened by how we were democratizing science, all these lofty things that filled our heads. 

But as it turns out most of the professional scientists we talked to, instead of wanting to bomb us, wanted to hug us. Most scientists got into their field to make a difference in people's lives. They're as frustrated as consumers are that we're not making progress more quickly. They feel this esprit de corps with us.

Now, with a little bit of time to reflect on that experience, we realize that it was a bit naive of us to expect that they were going to hate us. Actually, it was us not treating them with high enough esteem rather than the other way around. Because they want to make the same difference that we all do.

Human Genome cost
The cost of sequencing a human genome has fallen dramatically since 2001.

Have you found particular ways that your community might differ from the more traditional scientific establishment?
Yeah, occasionally we'll see someone come to us with an idea for a study they would like to organize. They start documenting what the study should be about, and sometimes their first draft really looks too much like an 80‑page paper you would see in a science journal. There's nothing automatically wrong with 80‑page papers in science journals, but it's not usually a very accessible form for Internet engagement.

We're seeing that when you use flowery language and the scientific passive voice and anonymity, and you don't let any element of your personality come through in the writing you're doing, people tend to wait longer before they're going to get involved. That's something we think is related to trust.

If your photo is just a blacked‑in profile shot of you as an anonymous avatar figure next to a username that doesn't make any sense to me, and your opening paragraph supposedly inviting me to come participate has a bunch of eight‑syllable words that I don't understand. Well, I'm much less likely to take the next step and say, "Oh, let's find out what this particular study community is doing."

Organizers need to create a welcome mat for the first experience that explains in understandable language what the community is going to study, or a little bit about why the study is important to the organizer. When that happens, people are much more likely to read further, and eventually will read a little bit of the scientific brief.

There is real science going on here, but part of the innovation our community has arrived at is doing this in a relational way because that's necessary to get many more people involved. We think at the core of that actually, is trust and relationship.

To build those relationships, I can see how it would be really important for users to feel free to… be themselves?
Yeah, we’re seeing that when we encourage organizers and participants in our community to be themselves rather than acting as an image of how they think someone in that role is supposed to act – we think we see a material difference in the engagement from the rest of the community, in a given study, and we think that's linked to trust.

I'm saying the word "think" a lot right now because we're early‑stage, and we have not had the chance to apply much rigorous behavioral science to a lot of the things going on under the covers, but we have hypotheses and we have observations, and we make inferences now and then.

How else have you gone about fostering and building this community?
In the very early days of experimenting with Genomera, we saw engagement and the level of collaboration skyrocket once we turned on a more informal way of interacting – conversing, chatting, replying to one another, posting insights, posting interesting articles, things like that.

That was actually a really significant lesson for us in this endeavor. There’s collaboration that's very structured around the specific mission of why people are together in a group. But then it was also really necessary to add this social collaboration, which, just to a trained scientist's eye, might be superfluous. 

We found having the two together is why it works so well. There's a way in which we could probably take a little bit of credit for having discovered that people want to work this way and providing that for them. A humbler way to look at the situation is just that there are human beings involved, and so of course they're going to want to collaborate.

It’s about more than just plugging someone in as an automaton to follow a task in this piecework world. It’s also about letting them express themselves as a human, as someone who has relationships with others, and that helps users stay engaged in the work.

Are there other lessons you’ve learned about what it takes to make a community successful?
Yes, definitely. As we design our product, we constantly remind ourselves of a tension that we refer to as “canvas and frame,” which I can talk a little bit about. 

Individuals who work collectively need to be given a space that invites them to create. There's a tremendous amount of work to get that right, to create the right metaphorical canvas for people to create these health studies and to engage them.

I think that most writing and public speaking that you see about collaboration is mostly about that. How do you get this canvas right? What's going to encourage people to do their part?

But we've learned that the frame is equally important. The frame represent the constraints that keep people focused on the task or mission at hand. It's not just an open canvas. It's a canvas that has a border, and that border limits the choices people have to make in order to contribute.

It turns out that in daily life most people don't want eight choices. They want two or three, or maybe just one. We have to do the work of discovering what constraints will help people be most creative on that canvas.

When we're designing Genomera, we go through a bunch of ideation and brainstorming. Probably the most time‑consuming portion of the design phase for our product is removing things. We go through exercises like, "OK, name people that we know of in our community that would want it to be like that." We believe that it’s not worth potentially ruining an easy experience for 90 percent of the people, in favor of a small group who might find a new feature invaluable.

This notion of canvas and frame, of openness and constraint, and holding that tension, is a really important principle to us in getting people to move toward collective action.

It sounds like your team has been rightfully mindful of your frame. What have been some of the more important parts of the Genomera canvas?
The user interface and user experience for the online platform has changed dramatically over the lifecycle of the product so far, and we're still in private beta so I think there are many more changes still coming.

When we began, we weren't even sure if people would volunteer to do these studies together, so we didn't put a lot of work into "what typeface is going to express an environment of straightforwardness and trust?" But eventually we got to the point where it was worth spending some time thinking about how things like typography would affect people’s inclinations. We actually have thought about that now because we realize that’s key to getting people to engage.

Sometimes we get as detailed as that, but other times it's at a much larger level, such as how to divide up the sections of a study when someone is first considering getting involved. For example, we started out with very, very long form stuff. A person might have to scroll through three screen‑lengths of introduction before they got to the protocol and tasks. We watched people interact with it, and we realized that most people want to know the basics of what they're signing up for, immediately.

Now with one or two clicks you can get the basic gist of what the study is doing and what the tasks are before you get into the whole long briefing.

One of the ways that we think about that is that we feel our product needs to express confidence. When you come to Genomera, you need to feel confident that this community and this product is going to treat you well.

That makes a lot of sense. With your platform growing, I’m curious how you ensure the right data is getting to the right people, so that a study will be successful?
For the participant‑driven studies at Genomera, nearly everything about a study is open. The design, the participants involved, the results are open, and even the data – often in de‑identified form, but even then – the data is open. The raw data that ends up being analyzed and helping people reach conclusions? It's all open.

One of the beautiful things about working in that kind of environment is that as long as we do a good job on the usability side, we actually don't have to worry too much about whether that information will reach the right hands. The community does its thing, and the data moves. It becomes liquid and available for use in practical ways and for skepticism as well.

You can come to one of these studies. You can look at the data, you can look at the conclusion, and you can say, "When I look at that data, I reach a different conclusion." You can publish it right there and you can start a conversation about it.

We're quite excited about the extreme openness that we bring to our health science, in helping people, but also in helping us do rigorous science.

That is really exciting, but I’m curious how you strike a balance between that extreme openness and the privacy of users?
That’s an important question. We’ve built controls into our user experience that help people feel comfortable and help them navigate their own boundary of privacy that feels appropriate to them. People definitely express hesitation around how open they want to be about a particular health condition or how much of their data they're willing to share.

There’s been a lot of discussion over the last three years about privacy and genetic data, so that was one of the first places we added data‑specific privacy controls. For example, if you upload your genome file, we ask you to set your privacy settings on that file the moment you upload it. The two settings that are most popular are, you can say, "I want my genome file to be shared with any member of this community."

If you join the Genomera community and go browse the user directory, you can see, "Oh, Melanie is sharing her genome." And you can go download Melanie's genome and see what you want about it. We have people who do this. They're very open about their entire genetic makeup.

A more common setting that people choose is to say, "I will share portions of my genome file, but only as a study asks for it. Ask me each time a study is looking to see into my genome file if I'm going to share that portion."

When you join, the study asks, "Do you want to join the study? Are you willing to follow the protocol on yourself?" and "Are you willing to share this portion of your genome with this study?" If you say yes, then our software automates the sharing of just that portion.

The community principle behind all of this is, let people exercise their own locus of control. Respect them enough to expect that they'll know the implication of a privacy setting and let them do it, but do it in a way that is context‑specific.

Genomera Screen 1
The Genomera website.
Genomera Screen 2

Let’s switch gears a little, as I’m curious to get your feelings about this movement as a whole. It feels like we’ve had the technology for awhile, but we’re just recently seeing a bigger shift into more crowd-sourcing and collaborating on the whole. Do you have an opinion about why we’re seeing more of this now?
It’s a big question. I think the one‑word answer is Facebook.

Now, that one‑word answer is way too un‑nuanced and not subtle enough to explain what's really going on in the world, but I think it would be easy to underestimate the influence that Facebook is having on everything else that's happening in the world. Even on people who don't yet know what Facebook is. Its effect on the world is affecting those people as well. Facebook has been incredibly influential in potential creation.

In a way, it's not unlike the time in the mid‑to-late 90s when the Worldwide Web was experiencing a maturation of its user interface and user experience conventions, and you went from a world where every home page looked so radically different that you needed to be trained on how to use it...to a world where you knew a thing that had this kind of shadow around it was a button, and so you knew how that button worked no matter where you went. Facebook has done something akin to that for us in online relationship and collaboration.

Now I don't think that Facebook is the end‑all in collaboration things, but I think we have to thank them for that contribution, for training a whole group of people on how to do things together online and what's possible. Now we can take that and apply that to many different platforms, many different causes.

The other big, big thing in technology is the mobile revolution. Now the medium for interaction for many of these communities is more often the thing you're carrying in your pocket than the thing you're carrying in your briefcase. The ability to reach out and touch someone at the right moment, for some of these smart phone platforms that are becoming so pervasive now, is absolutely explosive in terms of collaboration and movement of people in collective action.

There's subtlety in these new technological infrastructures that are quickly becoming woven into the fabric of social interaction. I think it's not an overstatement to say it gives us another quantum change in how we can help people work together.

Do you think these kinds of platforms can also succeed in a business environment?  
I haven't found a simple way to answer that question yet. It feels really complex to me. The history of the world as we know it has often required cooperation among people and it has required capital to get big things done, and so while the idealistic side of me would like to dismiss capital concerns as, "Oh, yeah, that'll all just get worked out," the practical side of me says, well, let's not be too quick to throw that baby out with the water.

This is actually quite pronounced in the world of health. When we have opportunities to do things with companies and people from the traditional capital part of the world, we often exercise caution about what kinds of relationships we want to be involved in and what their effect will be on our community. We're cautious, but we don't automatically discount the possibility of doing something good there, because that's where capacity for doing good still exists.

There just aren't enough examples yet of producing life‑changing health therapies without large amounts of capital and without the backing of a company with quite a bit of means. At Genomera, we're helping push down the cost curve, especially on the discovery side. But if you figure out a compound that's going to save people, you still need to find a way to manufacture that compound. There just aren't very many open-source biopharma manufacturing facilities in the world right now.

I love the open source world, but I'm trying to be extra frank here about the tension that I think we in the collaboration world need to feel about where our unchecked ideals might take us further away from the capacity to get things done. I think we have to be open to discovering new models of relationship, even with companies and people of older‑world means, to get done what the world needs.

We watched your address to the U.S. Presidential Commission on Bioethics. You mention the William Gibson quote “The future is already here, it’s just not evenly distributed.” We really liked that quote. Can you talk a little bit about how you see it guiding Genomera?
Yeah, maybe we have one of these Gibson situations where we've already built a version of the future, but there's just not that many people doing it yet. For me as an entrepreneur and as a leader, that has two implications. 

One of them is very inspirational of, "Wow, we might be on the right track to something that could help the world in a massive way, just massive."

But it's also a bit cautionary to me, because I wonder, "If that's true, are we being too cautious in how we distribute it? Have we kept it in beta too long? Are we actually holding back potential that's ready to be unleashed?" That's one of the questions that keeps me up at night is, "How much caution is too much caution?"

When we're dealing with things in health, people's lives are on the line. It's not the same thing as just a new way to send digital photos on our phones; that you can just experiment with anything you want, and it's not really going to affect anyone's physical life. So that pushes us towards being a little bit conservative. 

But we have this growing throng of people who are embracing this new future, and maybe it's time to let them run with it.
Thank you, Greg.

LEARN MORE:
Visit Genomera.

Watch Greg’s address to the U.S. Presidential Commission on Bioethics about Genomic Privacy and Data access, or read the transcript.

Learn more about crowd-sourced health studies. 

Find out more about the future of Genome Sequencing, as well as the debate over the $1000 genome.

Join the conversation