Category Archives: Open Humans

Joining Open Humans

Note: Cross-posted from my original post at http://ruleofthirds.de/joining-open-humans/

I am more than delighted to announce that I will join Open Humans. Supported by a fellowship I will assume the role of Director of Research in November. Open Humans as a platform connects individuals who want to participate in research with research studies and projects that can be run by academic and “citizen” scientists alike. As I make this transition, I’d like to take the opportunity to reflect a bit on path into all things open* and what my vision for future is.

Digging into the old archives of my first (German language) science blog I find what must be my first public writing about Open Access back in April of 2009 and it’s been quite a ride since then. Back then I was a frustrated life sciences undergrad student, annoyed by not being able to read all the primary literature that sounded interesting enough to read. Frustrated enough even to run for state parliament on the platform of the Pirate Party in 2010, campaigning for both Open Access in the narrow sense and open access to education in the broader sense. While I ultimately didn’t end up in parliament, little did this to deter me from being more involved in opening up how research can be conducted. After moving on to doing a master’s degree in ecology and evolution it wouldn’t be too long before the next hobbyist open* project should start.

Only a year later, in the summer of 2011, Philipp Bayer and I started to work on openSNP, an open source repository that allows people from around the world to donate their genetic and phenotypic information into the public domain. Thanks to the magic of open source we were quickly joined by the ever talented Helge Rausch. Being frustrated was yet again a big driver in the process. Ironically, my frustration at that time was with the same people who started Open Humans. I wanted to donate my 23andMe data to its intellectual predecessor, the Personal Genome Project, only to discover that accepted donors had to be US citizens or residents. What else could one do in such a situation but start an alternative data repository, right? And ultimately our completely unfunded grassroots approach of “people just doing things in their spare time” did pay off: So far over 3,700 data sets have been donated through openSNP – making it the largest open* data source for personal genomics data. Along the way this work has led to many fun collaborations and interesting data uses, including work on the ethics of participant-led research, studies on genomic privacy, crowdsourced machine learning competitions based on genetic data and even art installations.

My own work in open* over the years has focused a lot on how to break down barriers to participation in research at large, be it in who’s getting access to publications, supporting people who want to start their own open* projects or evaluating how we can improve research by including participants more in the process. But while open science may be slowly winning in who is getting access to publications and data, there is still a long way to go when it comes to who will actually participate in doing research: For a large part research is still heavily confined to the realm of academia, with all the biases that this entails that lead to a growing divide between researchers and the “general public” at large. We need to take the next step in opening up science, this time to larger audiences, involving people much earlier in the research process, transforming “citizen science” into an endeavour that’s actually participatory and gives participants much more agency.

And to me Open Humans is doing just that: Offering a space that is open to everyone or – as Madeleine Ball put it so succinctly in her introductory blogpost as the Executive Director of the Open Humans Foundation – an empty garden with everyone of you being the gardeners. As such, Open Humans allows you to design and execute research projects, regardless of whether you are coming from Academia or not. I think the big success of the Quantified Self movement is testament to the wish of people to study themselves and do research. The great idea is that by increasing inclusivity we will all win. When academic and participant-led research come together – informing each other in the process – we will all end up with new and better research, asking more relevant questions and getting more satisfactory answers. So, if you have an interesting idea you would like to research, then please go ahead and give it a try!

Now that I just handed in my PhD thesis (obviously doing some meta-research on my thesis writing that’s fully in the spirit of Open Humans along the way), I want to put all of my energy into making the shift to more inclusive and grassroots-style research happen. This is made possible by Madeleine Ball, who has years of experience leading this field. She was not only instrumental in the success of the Personal Genome Project, but also co-founded Open Humans. She is herself a fellow of the Shuttleworth Foundation, and it is funding from this fellowship – along with her own co-investment! – that gives me the chance to fully pursue this. I am extremely grateful for this and her guidance will offer an excellent learning opportunity for me. I also have to thank Chris Mungall and the whole Berkeley Bioinformatics Open Source Project (BBOP) group for their great support. Through it I will be able to do all of this in a great and supportive environment at the Lawrence Berkeley National Lab. My role during the fellowship will be to help you tend to this garden in the best way possible, hopefully building many new collaborations, projects, studies and friendships along the way. So, let’s together get the democratization of science started.


A note on the term “citizen science”: The term sucks. Of course true inclusivity needs to mean that everyone – regardless of their immigration status – should be able to be an active agent in the research process. While I think that “participatory science” makes for an excellent replacement for the activity itself, I still struggle to find a replacement for “citizen scientist”.

Announcing Bastian joining Open Humans!

IMG_9708_editI am thrilled and honored to announce an expansion to the Open Humans team!

Bastian Greshake Tzovaras will join us starting November 1 as Director of Research at the Open Humans Foundation. He is funded by a fellowship from the Open Humans Foundation to support his work pursuing our shared vision of advancing citizen science and open approaches to health and human subjects research. Before Bastian starts, I’d like to to tell you more about him – even if you think you know him well!

To many Bastian is best known for openSNP, a project he co-founded in 2011 with Philipp Bayer – and joined soonafter by Helge Rausch. OpenSNP invites individuals to donate and publicly share their genetic data (e.g. from 23andMe and AncestryDNA). OpenSNP members can also contribute additional data, including crowd-sourced trait surveys. It is a community and platform that matches the themes of the Personal Genome Project and Open Humans.

I think OpenSNP has been an impressive success. On a small crowd-funded budget, Bastian, Philipp, and Helge helped more than 3,700 individuals to publicly share their genotyping data. I believe this is more publicly shared human genotyping data than all other projects combined!

Finding some way to join forces with Bastian seemed obvious and overdue. And so, I reached out. Because for Open Humans to succeed as a shared vision, it needs more than just me.

And as I got to know Bastian better, I realized how profoundly dedicated he is to broad and resonant themes – of personal data sharing, citizen science, participatory research, open access, and open science. He has published research about personal data sharing behavior, participant-led research, analyses of Sci-Hub usage, open peer review, and open science tools – in addition to his thesis work with lichen metagenomics! He serves on the committees for the Bioinformatics Open Source Conference (BOSC), OpenCon Berlin, and a FORCE11 workgroup. He has worked with with Mozilla Science Lab to mentor open science projects, run workshop sessions, and teach participatory/open science approaches. He attends, speaks, and presents at numerous events and meetings – BOSC, MozFest, Creative Commons, Sage Assembly, OpenCon, and more.

In summary, OpenSNP was just one facet of Bastian’s prolific and wide-ranging dedication to open approaches and social change in how we perform research. His vision matches that of Open Humans, and his strengths complement mine.

Bastian’s work with Open Humans will focus on the following areas: sustainable approaches for citizen science and patient-engaged research, collaborations and outreach for participatory research projects, mentorship and support for projects, and academic engagement via collaborations, publications, and meetings. I suspect he’ll get involved in almost everything, as his skills and interests are so diverse!

It is an honor to have Bastian joining Open Humans. I am eager for him to begin, and I look forward to his work with Open Humans in the coming year – and, if all goes well, years to come. Together we can endeavor to grow an open ecosystem – one that is thriving, sustained, and expands the world with something powerful and new.

What We’re Reading

Some links to articles we found interesting. Hope you enjoy!

FTC Cracks Down on Marketers of “Melanoma Detection” Apps
Federal Trade Commission – February 23

Pregnant Women Are Finding Out They Have Cancer From A Genetic Test Of Their Babies
Virginia Hughes, BuzzFeed – March 5

What to do with a million (billion) genomes? Share them
Dawn Field, Oxford University Press blog – March 5

Apple Could Lead In Healthcare. Here’s Why It Won’t.
Dan Munro, Forbes – March 9

Genome Study Predicts DNA of the Whole of Iceland
Earlier, more provocative title: “Ethics Rules Keep DeCode Genetics From Revealing Cancer Risks”.
Antonio Regalado, MIT Technology Review – March 25

FDA ‘Taking a Very Light Touch’ on Regulating the Apple Watch
Adam Satariano, Bloomberg – March 30

Research led by participants: a new social contract for a new kind of research
Effy Vayena, et al., Journal of Medical Ethics – March 30

A New Facebook App Wants To Test Your DNA
The “Genes for Good” research study, which will return raw genotyping data to participants.
Virginia Hughes, BuzzFeed – March 31

The Healing Power of Your Own Medical Records
Steve Lohr, New York Times – March 31

Using Patient Data to Democratize Medical Discovery
Steve Lohr, New York Times: Bits blog – April 2

Ancestry.com is quietly transforming itself into a medical research juggernaut
Daniela Hernandez, Fusion – April 3

Mark Cuban Ignites Digital Health Firestorm On Twitter
Dan Munro, Forbes – April 5

A WordPress for genetic data, Curoverse opens in beta to researchers
Nidhi Subbaraman, BetaBoston – April 14

Media highlights about our launch

Some highlights of news coverage of the Open Humans launch:

We also had press in Reuters, Boston Globe / BetaBoston, Nature, Geek.com, HealthIT Security, Popular Science, the Daily Free Press, the Scientist, Scientific American, PM Live, the Knight Foundation blog [1] [2], the Stack, Geek, Fortune, and RT News.

We’re honored by the tremendous positive response to our launch!

Open Humans – website updates and improvements

We’ve had a wonderful response to our launch two weeks ago – as of today, over 1,000 people have signed up as members of this new community!

We’ll always be working hard to expand and improve the site. Here’s our first batch to report, post-launch.

A “Welcome” guide for new users
One thing our site really needed was a guide for new members! We’ve added some Welcome pages to help people get started with first steps.

Click here to see our tips for getting started on Open Humans.

Improved login
We also improved our login process: Now you can log in with your username or your email address. If you had trouble logging in before, we hope this makes it much easier!

Data sources survey
One of our new welcome pages is actually a survey. Do you have data sources (e.g. 23andMe, FitBit, RunKeeper) that you’re interested in donating to research?

Although we can’t build everything at once, it’s important for us to know which data sources represent the highest value for our community – if you’re a member, we’d love to hear from you.

To contribute, please go to our site to fill out the survey.

We’re continuing to work hard to improve the website, as well as finding new studies and opportunities to import and receive data. Thank you for your participation and willingness to open-source your body!

News Release: How to donate your body to science, without having to die: Launch of Open Humans Network

“Open Humans” project backed by Knight and Robert Wood Johnson Foundation invites individuals to share their most personal health information to accelerate medical breakthroughs.

Note: embeddable videos, photos and graphics are available at www.supportmedia.org/openhumans

BOSTON (March 24, 2015) A group of top university scientists just launched a project to build a community of researchers and participants who want to benefit medical progress – by using technology to open up health data.

The “Open Humans Network,” created by researchers from Harvard, New York University and the University of California San Diego, is backed by a $1 million investment from the John S. and James L. Knight Foundation and the Robert Wood Johnson Foundation, each of which contributed $500,000 in separate grants.

The project aims to break down barriers that make it difficult for willing individuals to access and share their data with researchers. To this end, the Open Humans Network creates an online system that helps match people who want to share their health data with researchers who would benefit from access to more information.

“Think of it as open-sourcing your body,” says the project’s director, Jason Bobe who also runs the project’s parent organization, PersonalGenomes.org. “There is tremendous potential for accelerating medical discoveries by helping individuals take their health and personal data out of data silos and making the data more broadly used.”

The Open Humans Network hopes to accelerate scientific discoveries by making far more data available. The premise is that more individuals will join scientific studies if they are empowered with the choice to share their data. And the greater availability of shared data will allow scientists to conduct more studies, and produce more robust and meaningful results.

Researchers increasingly face problems in recruiting individuals to participate in studies. Participation rates in the US have been dropping, according to a 2011 report by researchers at Wayne State University School of Medicine.

Researchers can join the Open Humans Network at openhumans.org by adding their studies to the network’s data-sharing framework. Individuals can join and participate in studies that are part of the framework by importing their data into a profile on the Open Humans Network website.

At launch, the site invites members to join three studies:

  • “American Gut” – exploring microbial diversity of the human body;
  • “GoViral” – profiling viruses related to flu-like illness; and
  • “Harvard Personal Genome Project” – collecting genomic, environmental and human trait data.

With shared data from these studies, researchers hope to glean new insights only possible after combining the data, for instance, whether a person’s gut microbiome influences susceptibility to the flu.

The founders plan to add other health data-related services like RunKeeper.

The project does not treat the sharing of private information lightly. Individuals who want to publicly share their data have to pass a test as part of the consent process to demonstrate that they understand the potential risks of sharing personal health data, such as discrimination or embarrassment.

“We strongly care about the impact of sharing, which is why the project has a research component, including an ethics review board, to study the outcomes of such personal health data disclosure,” said Madeleine Ball, the project’s lead investigator. “Despite the risks, we find many people genuinely want to ‘open source’ themselves to contribute to the greater good.”

“Open Humans is one of the leaders among a new group of platforms that aim to change the way scientific discovery is made,” said Paul Tarini, senior program officer at the Robert Wood Johnson Foundation. “We see their efforts to foster more collaboration between participants and researchers, including making it easier for participants to share data and to comment on early research concepts as important steps to help advance and accelerate medical breakthroughs.”

Open Humans Network was a winner of the Knight News Challenge on Health, which focuses on using news and data to engage communities.

“Making data more open and accessible is essential to building more informed communities,” said John Bracken, Knight Foundation’s vice president for media innovation. “Open Humans Network answers that call, leveraging new technologies to unlock health data so that people can better make decisions on issues that are important to them.”

Ball emphasized that the project’s founders hope to reach people with a passion for science. “For individuals who care deeply about helping advance science and medicine, informed and responsible sharing of their personal health data is an important and meaningful option to benefit society,” she said.

As one participant put it: “It’s like donating your body to science, without having to die.”

To register a study, enlist in research, apply here for more information, visit http://www.openhumans.org.

About the Robert Wood Johnson Foundation: 
For more than 40 years the Robert Wood Johnson Foundation has worked to improve health and health care. We are striving to build a national Culture of Health that will enable all to live longer, healthier lives now and for generations to come. For more information, visit http://www.rwjf.org. Follow the Foundation on Twitter at http://www.rwjf.org/twitter or on Facebook at http://www.rwjf.org/facebook.

About Knight Foundation:
Knight Foundation supports transformational ideas that promote quality journalism, advance media innovation, engage communities and foster the arts. The foundation believes that democracy thrives when people and communities are informed and engaged.

About PersonalGenomes.org
PersonalGenomes.org is a charitable organization working to generate, aggregate and interpret human biological and trait data on an unprecedented scale. Its mission is to make a wide spectrum of data about humans accessible to increase biological literacy and improve human health. The nonprofit’s efforts are informed by values encouraging greater transparency and collaboration between researchers and participants. Its programs include Open Humans, Personal Genome Project and the annual GET Conference.

What is Open Humans?

What is Open Humans? Open Humans is about science, sharing, and community. To kick off our blog, we’d like to open with some links to various media about Open Humans from the past couple months.

Personal Genome Project Participants at GET Labs. Aurelien Dailly for PersonalGenomes.org, CC-BY.

New platforms aim to obliterate silos of participatory science

(Article) GET Labs and Open Humans are discussed in this article by Elie Dogen at Nature Medicine News, including some quotes from Jason and the context of GET Labs. Also some quotes from researchers we plan to work with at American Gut and Flu Near You (Daniel McDonald and Rumi Chunara).

By opensource.com, CC BY-SA license.

Some patients are eager to share their personal data

(Article) An interview of Madeleine by Shauna Gordon-McKeon, posted at opensource.com. Madeleine gives some background on motivation for the project, reflecting on lessons learned by the Personal Genome Project at Harvard.

2014bitsbiology_screenshotOpen Data, Open Humans

(Video, 9 min) Madeleine’s talk about Open Humans at the Bits ↔ Biology meeting at MIT. Human research generates identifiable data, creating a tension between privacy and data sharing. Participant-mediated data sharing has the potential to unlock that data and transform how we research ourselves.

From Volunteers, a DNA Database

(Article) In April, the New York Times Science Section featured GET Labs, the Personal Genome Project, and other Open Humans collaborators. Quotes from Jason, Open Humans adviser Abigail Wark, and participant Beau Gunderson.

screenshot_QSPHS-2014_Jason-talkParticipant Centered Research Design

(Video, 10 min) Jason discusses the concept of “participant-centeredness” at the Quantified Self Public Health Symposium at the Qualcomm Institute at UCSD.