Citizen Science and Mapping the Microbiome

; Jessica Richman, DPhil

Disclosures

June 21, 2016

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Editor's Note:
The microbiome is one of the fastest-growing areas in biomedical research, fueled in part by engaged patients and citizen scientists with an interest in understanding how their microbiota may affect their overall health.

In this One-on-One, Medscape editor-in-chief Eric Topol talks with Jessica Richman about the value of citizen science as well as her company, uBiome, which provides microbiome analyses to consumers and plans to begin providing physician-ordered medical diagnostics in the near future.

The Citizen Science Movement

Eric J. Topol, MD: Hello. I'm Eric Topol, editor-in-chief of Medscape. I'm very happy to introduce Jessica Richman to you. Jessica is a major citizen-scientist advocate and the CEO of a microbiome company called uBiome. Welcome, Jessica.

Jessica Richman, DPhil: Thank you. I'm honored to be here.

Dr Topol: Before we get into the microbiome, let's first talk about the big movement going on in citizen science. As you've pointed out, there are about 7 million scientists in the world, but there are more than 7 billion people—what if we could convert them?

Dr Richman: That's right.

Dr Topol: So tell us your thoughts about this citizen science movement.

Dr Richman: "Citizen science" is a term that was coined in the 1970s by ornithologists—scientists who study birds—who realized that there were a lot more amateur bird-watchers than there were professional scientists who study birds. So why not incorporate the information from amateur bird-watchers into ornithology? It started the thought process of asking, "How do we involve the public in science, and how do we expand the role of the public in science?"

What got me interested in citizen science was the idea of taking a step back from that and from how science is done now, and looking at that example of how we can involve the public in science at a broader level. We have 7 million scientists now. What would our world look like if we had 20 million, or 100 million, or 1 billion? What would we be able to accomplish? What would we be able to learn? What diseases would we cure? What questions would we solve?

That really inspired me to take this approach of involving the public in science. I think it's inevitable. In the age of the Internet, we crowdsource so many things. So many unimportant things are crowdsourced, and millions of people weigh in on polls about whether a dress is white and gold or blue and black. But they don't weigh in on really important questions.

Dr Topol: You're bringing up this other topic of crowdsourcing science. We have massive worldwide projects to understand RNA structure and all these other biological things. Who would have thought that millions of people would want to voluntarily give their time for that? So what we're looking at is a new era in which information is widely transferable. The Internet is, of course, a major vector of that. It's activating people who have an interest in science, but there are a lot of other people who hear the word "science" and they get kind of antibodies to this, right?

Dr Richman: It's funny how on one side, we have this concern about public understanding of science—people are scientifically illiterate, people don't understand basic facts about our universe, or people are uninterested in science. And then on the other side, we have scientific institutions that keep people out of science by saying, "Unless you have a PhD from the right school and you get hired to do a specific thing and then you get a grant that has been approved by a committee and you go all the way to the end of this process, only then can you be involved in science."

I think the obvious solution to this problem is to involve people in science. Of course, there is great value to the expertise that is gained on the way to a professorship and getting a grant in terms of directing research, but it doesn't mean that you have to be the only one who then performs science.

Something I often think about is how science is kind of a spectator sport. If you want to watch people play football, you can do that, and if you want to play football, no one is stopping you from playing football. You won't play at that level, obviously, but you can still play football.

But in the world of science, you can't play science. You can't take ideas that you have, however strange they may be, and test hypotheses to see whether they're true in any way that is globally useful without something like the process of citizen science.

This is a real passion of mine—promoting this idea and manifesting this idea, however you want to put it—of taking science from being a spectator sport, where people just watch other people do it, to a world where most science is done in a way that incorporates people into the scientific world.

Interest in the Microbiome

Dr Topol: Now, you just got your PhD.

Dr Richman: I did, yes.

Dr Topol: Tell us about your background, where you worked before.

Dr Richman: I studied computer science and economics at Stanford University. Then, I got a fellowship to go to Oxford University. It was while I was doing the PhD at Oxford that we started uBiome. I had done most of my research first, so I was able to write things up and then get the PhD.

The interesting piece about that is that, as a person who is not specifically focused on the microbiome—someone who is not a microbiologist, or even a geneticist—how would I ever gain access to this world to be able to understand how the microbiome can affect the human body and what the implications of that are? I really think that there is a broader role for democratization—for everyone, certainly, but also for people from other fields who may have something to contribute.

Dr Topol: So here you are. You have this background, you're interested in citizen science and crowdsourcing, and then there's this science moving forward on the microbiome, which is going at an unprecedented pace.

Dr Richman: Oh, it's breathtaking. If you look at the list of articles...

Dr Topol: And the number of hits on articles and their connections with diabetes or cancer or heart disease—it's really incredible. You got involved in the hottest area of biomedicine in many ways.

Dr Richman: One of the things I studied at Stanford was an optional honors program that you could do that looked at scientific revolutions. It was called "Science, Technology, and Society." How does scientific change diffuse within a population? How did the bicycle come into common use? How did the birth control pill come into common use? Are there any similarities in the ways these were done?

It really fascinated me, how you could use technology to create social change, [and] how technology itself creates social change whether you want it or not—maybe in good ways and maybe in bad ways. So I had an overview, even before I knew about the microbiome, of how these changes can happen.

Dr Topol: You were looking for a revolution.

Dr Richman: That's a good way of putting it. I was looking for a way to have that kind of impact.

The Founding of uBiome

Dr Topol: So when did you form uBiome?

Dr Richman: We started uBiome in October 2012, and we started a crowdfunding campaign in November 2012.

Dr Topol: So it has just been 3 years.

Dr Richman: Yes, just 3 years.

Dr Topol: And you now have had 50,000 people who have sent their poop samples to you.

Dr Richman: Yes, poop and other things, too.

Dr Topol: Not just the microbiome of the gut.

Dr Richman: Yes, other microbiomes too.

Dr Topol: After they send it to you, what do they get? And by the way, how much does it cost to do this?

Dr Richman: We currently have a consumer product that is $89 per sample. It's less if you have a subscription or if you do more than one sample at a time. We're branching off into the clinical space, so there will be a health and wellness consumer product on one side and a clinical diagnostic product that is sold through doctors—a more traditional diagnostic—on the other side, which will have different pricing, obviously.

On the consumer side, you swab your toilet paper for the gut sample, and you swab your mouth or your skin or whichever other site for the other samples. You send it back to us, we sequence the microbiome in our lab using proprietary techniques that we've developed, and then we give you your results.

In the very beginning, the results were a list of bacteria, but now, we're expanding the range of what we're saying. It's not just a list of bacteria, but which ones are most unique to you, which ones have changed the most, and trying to score your diversity vs other types of microbial diversity—trying to score whether or not your probiotics or prebiotics are working, if you are using them.

Dr Topol: If you're taking them, do they really work?

Dr Richman: I think the answer is, it depends. It's very personalized. The microbiome is kind of made for personalized medicine. You're taking an organism with the hope that it starts to grow in your microenvironment, and the only way to know whether it did is to see if it's there, living in your microenvironment.

Dr Topol: On the other hand, have you had people who sent samples before and after they took a course of antibiotics?

Dr Richman: We have, and there's a dramatic change. You can see that the diversity, within a day, goes down. And then the question is, how does your diversity recover over time? Does it take it a week? Does it take it a month? Is it not recovered 2 years later? There was a study that was published in the past couple of years about how people still have diminished microbiodiversity 2 years after a course of antibiotics.

Expanding Into Clinical Medicine

Dr Topol: Yes, it's pretty striking. Now, you're currently a consumer product. You're not making any medical claims.

Dr Richman: Correct.

Dr Topol: You're just helping people who are curious about their microbiome and health to get some data back.

Dr Richman: Yes.

Dr Topol: But you're pivoting, becoming a more medical entity?

Dr Richman: It's an extension, because we're not stopping the original service.

Dr Topol: "Extending" is probably a better term.

Dr Richman: Yes. So, we started off with just the microbiome, but we realized that we were finding some very interesting things in our data that we couldn't tell people, because a test that is not processed in a Clinical Laboratory Improvement Amendments (CLIA) lab and ordered by a doctor doesn't have the heft of the medical system behind it. You just cannot tell certain things to people.

Dr Topol: Can you give an example?

Dr Richman: A really good example is pathogens that you detect.

Dr Topol: Like if you have C difficile or something like that?

Dr Richman: Exactly. You can't tell people things like that. There's a very broad range of valuable things in the medical context that we [could potentially] tell people.

We want to expand for a number of reasons. One is responsibility. We know something, and we want to be able to tell people. The other reason is that we would be making a product that is much more useful because it will not only tell people about health and wellness, but also tell them specifically about medical questions.

Dr Topol: It's obviously much more important than most people acknowledge. Over time, we're starting to realize that this is actually pretty darn big. In fact, a lot of the heritability that was missing from the sequence of DNA is starting to show up in the microbiome.

Dr Richman: Yes, that's very true.

Research Collaborations

Dr Topol: It's quite an exciting field. Where are you going to go with this? You have a contract with the Centers for Disease Control and Prevention (CDC), is that right?

Dr Richman: Yes. We're doing a lot of research collaborations; that's one of them. We probably have more than 100 collaborations at this point with different researchers.

We're going in a number of different directions. One is sort of the "Fitbit for your gut" type of health and wellness direction. Another is to collaborate on useful research as much as possible. The third is in this clinical diagnostics area. There are a lot of companies that are taking therapeutic approaches to the microbiome. There is bound to be a tremendous amount of new approaches to small-molecule drugs and probiotic cocktails; there is much value in that area. That's not our approach, but I think there is going to be a lot of interest in both the therapeutic and diagnostic sides.

Dr Topol: You haven't published anything yet, but that's in the works. Is that right?

Dr Richman: It's in the works, yes.

Dr Topol: Are you going to eventually take all those tens of thousands of people and share that data with other microbiome researchers so that we can really accelerate?

Dr Richman: When we first started, we had a lot of debates about this. [Microbiome research lab] American Gut was launching around that time. They launched just a little bit after us. They took the approach that your data are going to be published on the Internet, full stop. The purpose of their project is to give data to scientists, and we want every scientist in the world to have access.

Dr Topol: Open Humans is a big project.

Dr Richman: Exactly. That was the approach that they took, and they joined Open Humans after that.

We saw this absolute tradeoff between privacy and scientific access. You can't have both at the same time. From our perspective, we didn't want to share [the information] with nobody and we didn't want to share it with everybody. We wanted something in the middle, so we decided to share with researchers who collaborate with us. We know who they are [and] what they're doing, and they've signed a research agreement with us saying that they won't publish it on the Internet, sell it to anyone, or do anything that we wouldn't want them to do, but they can have access. That's the middle ground.

I don't think that there's a time—I probably shouldn't say this, because then there will be some good reason to do it—but I don't think there will be a time when we'll just say, "Here are your data. They're all over the Internet. Sorry, guys. You thought they were private, but now everybody can have access to them."

Dr Topol: Let's say that the CDC says, "Jessica, we need to know whether this shows up in all your samples." Would you then comply with them?

Dr Richman: It depends on the situation, obviously, but I think so. That's the purpose of why we're putting this together—so that we can use it for public health purposes.

Dr Topol: That sounds good. Now, any time there is a disruption, there are lots of people saying that it's bad. How do you respond to that?

Dr Richman: They're saying that it's bad in different ways. People no longer say very often that it's bad because the microbiome doesn't matter.

Dr Topol: Yes, we're kind of getting over that one.

Dr Richman: People say that it's bad because people shouldn't have access to that information. I think we're also kind of getting over that one.

Dr Topol: I hope so.

Dr Richman: I hope so, too. I think that what people are legitimately concerned about, because these are concerns that we also share, is that the information is shared in a way that is understandable; useful; medically relevant, where that's important; and reproducible, and has the right sensitivity and specificity parameters. All of those things are important. That's what you would want from any other technology, whether it's on the medical side with much more rigorous standards, or on the consumer side for a broader understanding of health and wellness in terms of probiotics and food.

Dr Topol: It'll be interesting to see how this goes forward. The main new directions are, beyond this initial consumer path, trying to work through the medical community-established path. Anything beyond that?

Dr Richman: I think that's a lot to start with, and there's a lot that comes after that as well. We hear a tremendous amount of interest from the medical community about the microbiome. There just aren't [options] for doctors. Right now, if you say, "I'm a doctor who is fascinated by the microbiome; what do I do?" [then] many of them are buying consumer microbiome kits because they don't know what else to do. I think that going forward, there will be a lot more information for doctors to use in their practices. Maybe I just don't talk to the doctors who say that the microbiome is not important. What I hear a lot is, "It's very important, I know it is, but what do I do?"

Dr Topol: It's also going to [depend on] the quality of what you're reporting back.

Dr Richman: That's right.

Dr Topol: As you said, you're getting more granular, more potentially useful data. Also, the larger your sample, no less the whole field in general, the more informative it becomes.

Well, Jessica, it has really been wonderful to discuss this with you. Thanks so much for sharing the story of your career and that of uBiome, and in another way teaching us about not just citizen science but also the path of the microbiome moving forward. Thanks very much.

Thanks to all of you for joining us on Medscape for this interesting discussion with Jessica Richman. We look forward to having you on more sessions of One-on-One on Medscape.

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