Last week I finalized and publicly shared the File Uploader activity on Open Humans.¹
🎉

This is a standard “activity” in Open Humans. Our structure is modular: in theory, anyone can use the APIs to create an activity that does the same thing. (In this case, the activity is created and administered by us. Yes, it’s open source.)

As such, using the File Uploader requires going to a different site (which is linked on the activity page): https://www.openhumans.org/activity/file-uploader/

What’s the “File Uploader” for?

This is intended as a replacement for “Data Selfies” to be generic approach for file upload to Open Humans.

There are a variety of personal data files that people might want to upload in order to (1) share with research and citizen science projects, and/or to (2) run personal data analyses on using our notebooks tool.

Indeed, the number of potential data sources is infinite, and tracking which type of data is in a file is important (and tricky): this is critical authorizing and sharing data with other activities, and for identifying data when running personal data analysis.

About “Data Types”

“File Uploader” adds something new that “Data Selfies” lacked: data types.

Historically, Open Humans primarily understood “what” a file is according to “data source” — that is, the activity that added the data. (e.g. “23andMe Uploader” or “AncestryDNA Uploader”). This had two issues: (1) a single activity might generate more than one “type” of data, (2) different activities might have data of the same “type” and people might want to manage that in a unified way (e.g. “any personal genetic data”).

On top of that: it’s weird overhead to create a new website for each new type of file upload!

So “DataTypes” was created! Don’t see a DataType you need? You can create one yourself…

How to create a new DataType

1. Go to the DataTypes page: https://www.openhumans.org/data-management/datatypes/
2. Click “Add datatype”
3. Add information (e.g. “parent datatype” if any, how it’s acquired or created, format info)
4. Mark “uploadable” if this is something the File Uploader should support

Data Types created in this way (i.e. “uploadable”) are immediately available as an option on the File Uploader.

What’s left?

So far, the utility of “data type” isn’t fully implemented. Next things to do are probably…

1. Search Personal Data Notebooks according to “data type”. Right now it’s only possible to search according to “data source”. (Hopefully this is easy to do!)
   
2. Enable requesting “data type” for activities. Currently activities can only request authorization for specific “data sources”. This is probably “hard” to add (the logic and interface gets complicated), but it should be possible for a project to request a type of data (e.g. “sleep data”) in a generic way.
   
3. Retire old file uploader projects. As mentioned above, it’s silly to have separate projects for each one. (But doing this smoothly might require completing step #2 above.)

1 This was initially created a long time ago! I was very absent during the pandemic, and I’m trying to get back into things…. dusting off old stuff we meant to finish. 😅

We wanted to share our recording of an excellent a panel we had on Monday, and invite you to our next one on March 10.

As part of our Keating Memorial Self Research activity, we discussed how to get started with your own self-research, what challenges one might experience, and advice to solve any issues encountered so far. In addition to having some veteran self-researchers, we were happy to have some first-timers join us as well!

Liz Salmi, Katarzyna Wac, Rogier Koning, Steven Kaye, Gary Wolf and Steven Jonas joined Bastian Greshake Tzovaras and Mad Ball to share their experiences on a variety of topics, including how to collect relevant data, how to keep motivated when doing time-intensive active tracking, and how just the act of collecting data can already modify our behavior.

You can watch the full recording at https://www.youtube.com/watch?v=v2JmFSQ4ZjE

We’re going to have the same format for our community call on March 10. Our topic is “From individual to collective self-research”: How do people translate individual ideas and efforts to work that involves others? This can include shared & re-used methods, tools, and analyses, to aggregating data for collective insight. We’ll invite attendees to participate as a panel of ourselves, and we’ll be recording the conversation to share everyone’s questions and insights with others.

You’re invited to take part! Meeting info: https://tinyurl.com/vu8nzze

If you’re inspired to do your own self-research, you can still join the Keating Memorial and join our group of self-researchers: https://www.openhumans.org/activity/keating-memorial-self-research/

This last weekend I was saddened to hear about the passing of one of our Board of Directors – Steven Keating, an inspiring activist and advocate for access to health data.

Steven Keating passed away on Friday, at the age of 31, ending his battle with brain cancer. When he was first diagnosed, Steven was a graduate student at MIT. His natural curiosity led him to collect and share diverse data about his cancer and treatment.

He shared all sorts of data, video of his brain surgery, and – most memorably – 3D printed copies of his tumor. You can read more about his life in this remembrance on MIT News: “Celebrating a curious mind”. Steven advocated for the importance of access to our health data: to explore, to use, and to share.

As a person, Steven was positive. Amazingly positive. It’s a lesson that helped me on a personal scale: sometimes bad things happen, but I learned that it’s still possible to face them with positivity. Steven taught by example.

When Steven’s “silly tumor” came back a year ago, he told me he wanted to keep serving as normal, as long as he felt able. And he did. He shared his experimental treatments with us during meetings. He had marked “yes” to a board meeting this Monday. He was with us as long as he could be.

He will be missed. My life is a better one for having known him.

The self-nomination period for our Board of Directors is over and we are excited to share this year’s candidates! We hope to begin the community seat election sometime next week, followed by a board ratification of this vote and election of two additional seats.

Benjamin Carr

Links
https://twitter.com/BenjaminHCCarr
https://github.com/BenjaminHCCarr/
https://www.linkedin.com/in/bencarr/

I have been involved with and contributing to open source software, and like-minded communities for over 20 years now. I, like others, in OH am a firm believer in open science, open data, and open access. I was an early enrollee in Harvard-PGP, excited by the promise of enabling precision medicine and an open dataset for researchers to use. I hold a Ph.D. in biology from Boston University and have worked professionally in academic, NGO, government, and private industry.

My expertise bridges multiple areas of science having worked in oceanography, satellite remote sensing, AUVs, marine biology, and bioinformatics, as well as being involved with the 9/11 impact assessment of the Hudson River. I have also been running the OH Facebook account for the last two years. In 2018 I was lucky enough to have a hand in facilitating and doing QA/QC on a portion of the NIH Data Commons Pilot Phase Consortium, and have high hopes that at least one fully open source stack emerges from that endeavor.

Vero Estrada-Galiñanes

Links
LinkedIn: https://www.linkedin.com/in/veronicaestrada/
MyPage: https://sites.google.com/view/veroeg
Twitter: https://twitter.com/GalinanesVero
DSS workshop paper: https://arxiv.org/abs/1809.01974

I am passionate about trustworthy storage systems and digital archives. I am an active member of Open Humans. My interest is mainly focused on: 1) new storage solutions for OH data and 2) better data visualisations of life-logging data collections. I am also co-author of the Open Humans open collaboration article.

My vision about an open health archive was presented during the Data-Driven Self-Regulating Systems (DSS) Workshop in 2018. The main concept is to preserve the health-related data generated throughout the life of an individual without giving away data ownership while promoting open data and data sharing. I keep working on these ideas.

My recent experience comes from postdoc roles (storage systems / distributed systems).  I am a former postdoc at the Quality of Life Technologies (DIKU). Prior to academic jobs, I had leadership roles in the industry and government. I have experience in making sense of large databases. I collaborate with the SciEd Network (Lectures without borders).

Beau Gunderson

Links
Homepage: https://beaugunderson.com
GitHub: https://github.com/beaugunderson

I am a previous employee of Open Humans (2014-2016). Prior to 2014 I worked at Practice Fusion on the Data Science team, and from 2016 to the present I’ve worked at Canvas Medical building electronic health record software for primary care practices. My recent work at Canvas has focused on security and privacy (I am now the security and privacy officer in addition to my engineering duties).

Since leaving Open Humans as an employee I have been an active user of the project. I’ve also maintained a presence on the OH Slack and GitHub as well as offering my review of projects on the Project Review forum.

I believe I would be most useful in the realms of security and privacy and software development guidance.

Nathaniel Pearson

Links
Twitter: https://www.twitter.com/GenomeNathan
Blog: http://genomena.com/
Slides about various projects: https://www.slideshare.net/NathanielPearson
Talks:
https://www.youtube.com/watch?v=ZX0culYjU_A (whole-genome talk) https://www.youtube.com/watch?v=NxkL-KtUaJY (HLA talk)

Exploring what inner data say, about our health and history, has long driven my work. And teaming with fellow geeks, caregivers, and layfolk has made that a joy. The chance now, to help guide how we Open Humans bring our big ideas to life, as an anchor cohort for the biodata-informed future, would fulfillingly continue that effort. To that aim, I bring strong grounding in genomics, a passion to learn new stuff (hello microbiomes!…), and team spirit.

Background-wise, I trained in evolutionary genomics at Stanford and U. Chicago, led collaborative science at ships both small (Knome) and big (New York Genome Center), and teach genetic counseling students as guest faculty at Sarah Lawrence. To help folks pool personal biodata to drive crowd discovery, I launched the Empowered Genome Community in 2012 and recently founded the free, good cause-allied personal immunogenomics company, Root, to honor tissue donor volunteers with well grounded insights from their own match-screened genes.

Marja Pirttivaara

Links
Linked In: https://fi.linkedin.com/in/pirttivaaramarja
Twitter: https://twitter.com/marja_p?lang=en
Blog: http://www.dnaguru.fi/
Facebook group: https://www.facebook.com/groups/FinlandDNA/

I’m a Finnish PhD (physics) and MBA (social and healthcare management), working at the Finnish Innovation Fund Sitra and also an unpaid visiting researcher of the University of Helsinki (DNA related issues). I’m a genetic genealogy expert, admin of Finland DNA project with more than 15 000 members, admin of Finland DNA Facebook group, with 7 700 members. I’m also a founding member of MyData Global. I’m a practical and knowledgeable bridge builder, always curious about the future. I’m just waiting for my whole genome results.

My vision of Open Humans is a trusted global platform and actively cooperating community for fair & responsible sharing and utilizing personal data, mydata, tools and creating best practises.

As a Finn and European and a genetic genealogy & genome data expert (etc) I’d like to contribute to the Open Humans humans community.

Gary Wolf

Links
http://quantifiedself.com

By vocation I’m a journalist but since 2008 I’ve been focused on supporting the Quantified Self community as Director of Quantified Self Labs, a California based social enterprise whose mission is to help people learn from their own data. We’ve been allies and active collaborators with OH. Our most recent collaboration involves using OH to support a participant led research project (PLR) focused on self-tracking of ovulatory cycles. I’m aligned with the Open Humans mission to both support individual agency in using our own personal data to answer our own questions; and, in supporting the formation of new collectivities for shared knowledge making. I’m also closely aligned with the OH approach and cultural roots in the open source community. I look forward to helping.

Alexander (Sasha) Wait Zaranek

Links
Twitter: https://twitter.com/wait_sasha
Google Scholar: https://scholar.google.com/citations?user=Ifj9cY0AAAAJ&hl=en
Orcid: https://orcid.org/0000-0002-0415-9655

I am head of quantified biology at Veritas Genetics, the first company to introduce whole genome sequencing and interpretation to consumers and their physicians for under $1,000. My current research is focused on the delivery of real-time, biomedical insights from massive data sets, spanning millions of individuals across collaborating organizations, eventually encompassing exabytes of data. I am also a co-founder of the Harvard Personal Genome Project.

My hope is that Open Humans becomes a central, global hub for participatory research and participant led data sharing much as Wikipedia has become a hub for sharing facts. Specifically, I will use my relationships with the Global Alliance for Genomics and Health (GA4GH), NIH common fund, , the NIST “Genome In a Bottle” reference material consortium, and the global Personal Genome Project (PGP) organizations to further the integration of Open Humans with other local, national and international biomedical data sharing efforts.

In upcoming weeks Open Humans Foundation will be electing three new members to our Board of Directors. Two seats are elected within the board — and one is a community seat chosen by Open Humans members!

Anyone may apply to our board. The process involves a self-nomination, and nominees should be seconded by a current member of the Board of Directors. Board seat terms are three years.

At this stage we are inviting self-nominations. Being a director of this organization is a position of trust. It is our highest tier of governance – our ultimate decision-making authority. You can learn more about our organization’s governance by visiting the website: http://openhumansfoundation.org/

Our deadline for self-nominations is March 15. Please self-nominate by completing our self-nomination form: https://goo.gl/forms/P3eCAmExACoJ0P3Z2

About Open Humans: Open Humans is a US-based nonprofit website and community that helps individuals aggregate personal data, explore and analyze it, and choose to contribute data to academic research and community/citizen science projects. Visit the website to learn more: https://www.openhumans.org

You’re also welcome to chat with us and other Open Humans members in our community Slack chatroom! See: http://slackin.openhumans.org

With Open Humans we are not only working to empower you to decide with whom to share your personal data – but also to explore your own data. With our latest project addition – the Personal Data Notebooks – we are taking a further step in that direction. Based on the increasingly popular Jupyter Notebooks they bring together data analysis code, documentation and data visualization. With the added twist that the Personal Data Notebooks also easily provide simple and private access to your personal data that is stored in Open Humans. Which not only makes it easy to write and use a data analysis – it also makes it easy to share your results without having to share your personal data with someone else. That way you can not only learn about yourself and your data, but also about how data analyses are performed.

If you want to write your own data analysis for the notebooks from scratch you can get started in Python, R or Julia. Or if you want to tweak or run existing data analysis you can use and adapt existing notebooks. In the simplest case you don’t even have to write/edit any code, as the input data are standardized according to their Open Humans data source. So for example you can easily run a Fitbit analysis notebook written by someone else right away on your own Fitbit data. To get you started we have a step-by-step guide on how to use the Personal Data Notebooks, along with a set of ready-to-use data analysis notebooks for Fitbit, Apple Health, Moves, 23andMe and Twitter archive data.

But this is just the start. We can’t wait to see what kind of analysis notebooks the community will come up with. To kick off the development of additional notebooks we are running a small competition. Submit your own personal data notebooks until May 27th and our judges will select the most interesting submissions to add them to our example notebooks. For this competition Steven Jonas, Azure Dominique and Gary Wolf of QuantifiedSelf.com have agreed to be our judges! If you need an inspiration for your notebooks you can take a look at already proposed notebook ideas and discuss your ideas on Slack.

With an enormous thank you to all our candidates – and the members that voted –  I’m thrilled to share our three new members of the Board of Directors for Open Humans Foundation!

Community Seat: Dana Lewis

As the first winner of the Community Seat election, we’re thrilled to have Dana representing the interests of the Open Humans community. Dana is a pioneer in open source and health, including her leadership of the inspiring OpenAPS community and work connecting this community to research. You can read more about this – and how Dana has used Open Humans – in her post on our blog: “Why Open Humans is an essential part of my work to change the future of healthcare research”

Full vote tallies of the community election were as follows: Dana M Lewis (92), Alexander (Sasha) Wait Zaranek (60), Embriette Hyde (53), James M Turner (33), Katarzyna Wac (28), Richard Sprague (23), Chris Gorgolewski (16)

We are also thrilled to introduce two new board-elected directors!

Board-elected Seat: James Turner

James is one of the earliest and most active members of the Open Humans community, and has been profiled on our blog as well! Having joined through participation in the Personal Genome Project, James went on to create some of the first projects in our site – including an Apple Health import app that has been used in downstream academic research. In addition to his long commitment to this community, James brings valuable practical experience in managing nonprofit organizations, having created and managed his own charitable 501(c)3 for several years.

Board-elected Seat: Chris Gorgolewski

Chris is an academic in the field of neuroscience, interested in expanding the use of Open Humans among traditional researchers. Chris has promoted neurological research data sharing through his work with Neurovault, OpenNeuro, and reusable data sharing language for consent forms. Chris brings to the board a new facet of research, and an interest in promoting the use of Open Humans in studies — including the return of valuable data to participants to enable both individual access as well as re-use in new research.

Finally, I want to thank the candidates who volunteered to become members of our board. Candidates took time to communicate with us and with the community, and we are honored by the visions you shared with us. There were more excellent candidates than we had seats to fill! But there will be seats again, and we hope you continue to be part of Open Humans as some of our most brilliant members, colleagues, and advocates.

The self-nomination period for our Board of Directors is over and I am happy to announce that 10 eligible candidates are on the ballot!

At our annual meeting on March 26, two board-elected seats will be determined from these candidates. And following this, members of Open Humans will be invited to elect the third “community” seat! We invite you to learn more about the candidates by reading the introductions and further links below.

Benyam Alemu

About me

I am a national nonprofit leader, educator and researcher. I bring a
fascination for the applications of computation in biology –
through both bioinformatics and digital health to a an
entrepreneurial background.

My experiences range from leading companies, serving on institutional
steering committees, designing university coursework, creating
research experiences and influencing educational policy.

My vision for Open Humans is for it to also be used as a tool used by
other institutions to expose graduate students, underclassmen and
K-12 students alike to participatory methods of initiating and
conducting collaborative computational research.

Websites / Links

• www.linkedin.com/in/balemu/
• sendforc.org/
• www.theravisionhealth.com/

James M. Turner

About me

I have always had a passion for science, especially genetics. I ended up in software instead, but have continued to follow the field as an adult. I joined the Personal Genome Project in January 2011, and have been an activate participant ever since.

I organized and ran the PGP Participant’s Forum. I have also created several tools for the Open Humans API, including the HealthKit Uploader app.

I also have a second career as a freelance writer. I have written for publications such as the Christian Science Monitor, and have also written 3 books on software development. I also am the president and chairman of the board of a 501(c)3 public charity that has raised over $250,000 for cancer research, among other causes.

I think that I could leverage both my experience in journalism and in fundraising to assist the board in it’s duties. I would like to see OH work to expand the number of participants with active datasets so that the statistical power of the data would be increased.

Websites / Links

• www.blackbear.biz
• twitter.com/blackbearnh

Dana Lewis

About me

I am passionate about open source and open science efforts. I’m one of the creators and the first users of an open source artificial pancreas (e.g. hybrid closed loop) system to make life with type 1 diabetes easier. My skillset ranges from non-traditional technical skills to communication and strategy. I’m dedicated to taking what we’ve learned in the diabetes community & sharing these lessons learned with all communities. To that end, I’m also a RWJF grant-funded principal investigator, studying the processes of patient-driven and patient-led innovation research, with goals around scaling effective processes and collaborations between traditional and ‘new’ stakeholders. I’ve used OpenHumans for ~2 years now, and believe it plays an integral role in enabling individuals to share data and facilitate new research efforts. My vision is to help support and scale the organization to continue to meet the needs of these new stakeholders and communities.

Websites / Links

• https://twitter.com/danamlewis
• Repository of tools developed for working with OpenHumans data
• Why I’m building tools to work with OpenHumans
• Dana’s blog
• Open Source Artificial Pancreas System (OpenAPS) movement

Cameron Colby Thomson

About me

I am an entrepreneur, open source advocate, and PGP participant. My interest in open humans centers around the profound impact of genetics on our future as a species. As a board member of the Human Rights Foundation, and with organizations in life and health insurance, I am also deeply interested in the societal impact of sharing information which may allow third parties to predict our traits available in the public domain. I believe my primary contribution, aside from experience in board governance, would be to offer the board due diligence capacities in better understanding these risks and opportunities and communicating them to external stakeholders in stewardship of the foundation. More details and background are available on my website.

Websites / Links

• www.colbyt.com
  

Alexander (Sasha) Wait Zaranek

About me

I am head of quantified biology at Veritas Genetics, the first company to introduce whole genome sequencing and interpretation to consumers and their physicians for under $1,000. My current research is focused on the delivery of real-time, biomedical insights from massive data sets, spanning millions of individuals across collaborating organizations, eventually encompassing exabytes of data. I am also a co-founder of the Harvard Personal Genome Project.

My hope is that Open Humans becomes a central, global hub for participatory research and participant led data sharing much as Wikipedia has become a hub for sharing facts. Specifically, I will use my relationships with the Global Alliance for Genomics and Health (GA4GH), the NIH data commons pilot, the NIST “Genome In a Bottle” reference material consortium, and the global Personal Genome Project (PGP) organizations to further the integration of Open Humans with other local, national and international biomedical data sharing efforts.

Websites / Links

• Twitter: https://www.twitter.com/wait_sasha
• Google Scholar: https://scholar.google.com/citations?user=Ifj9cY0AAAAJ&hl=en
• Orcid: https://orcid.org/0000-0002-0415-9655

Embriette Hyde

About me

My passion for sharing science with the public started in graduate school, when I realized that scientists do a bad job of explaining their work to the broader community. This is critical — public perception of science has downstream effects on funding. A major roadblock is a misunderstanding of the scientific process and timeline. Citizen science projects help fill this knowledge gap by giving people the opportunity to contribute to science and experience it first hand. One of my most fulfilling experiences was managing the American Gut Project, which is part of Open Humans. Open Humans encourages people to support citizen science, and the dataset integration it promotes is critical for making precision medicine a reality in healthcare. My vision for Open Humans includes establishing educational efforts such as more regular and varied blog posts, short video blogs, and online courses — including a hands-on course on how to interpret scientific papers.

Websites / Links

• www.drhydenotjekyll.com/
• twitter.com/EmbrietteHyde
• www.linkedin.com/in/embriettehyde/

Richard Sprague

About me

Websites / Links

• richardsprague.com

Katarzyna Wac

About me

Katarzyna Wac is an Associate Professor of Computer Science at University of Copenhagen (DK) University of Geneva (CH), affiliated with Stanford University. Her research appears in more than 100 to date peer reviewed proceedings and journals in computer science, human-computer interaction and health informatics. She is a (co)-PI in several European, Swiss and Stanford Medicine projects. Dr. Wac leads Quality of Life Technologies lab researching how emerging sensor/actuator-based mobile and wearable technologies can be leveraged for a personalized assessment of the individual’s behavior and Quality of Life (QoL), as they unfold naturally over time and in context, and improvement of the latter. The vision for Open Humans is to enable individual’s short-term behavior and long-term QoL assessment and improvement based on the crowdsourced efforts of the donors, social and behavioral, as well as data scientists and practitioners leveraging the results for better QoL-enabling services.

Websites / Links

• www.qol.unige.ch

Chris Gorgolewski

About me

My life’s mission is to accelerate the progress of science by making as much data accessible to as many researchers as possible. Most of my work has focused on brain imaging data. I built a platform for sharing results of neuroimaging experiments (https://NeuroVault.org), as well as one for sharing raw neuroimaging data (https://OpenNeuro.org – formerly known as OpenfMRI). I have also been promoting ethical data sharing by providing ready to use text for participant content forms (http://open-brain-consent.readthedocs.io/en/latest/ultimate.html). I would work with the Open Humans Foundation to help integrate it with existing open neuroimaging databases and getting their participants involved in additional follow-up data collection via the Open Humans platform.

Websites / Links

• chrisgorgolewski.org
• twitter.com/ChrisFiloG
• github.com/chrisfilo

Nomi L. Harris

About me

I have been involved in the world of bioinformatics for decades. I have a master’s degree in Medical AI. Most of my work experience has been in bioinformatics rather than medical informatics, but I would love to get involved with something more directly relevant to health.

I have chaired BOSC (the Bioinformatics Open Source Conference) for the last 8 years. Under my leadership, BOSC has flourished and become more diverse in both content and attendance. I am also a board member for the Open Bioinformatics Foundation.

Websites / Links

• www.open-bio.org/wiki/BOSC_2018
• twitter.com/OBF_BOSC
• scholar.google.com/citations?user=1tW5iY4AAAAJ

Genevieve Genome Report is a tool that takes genome, exome, or 23andMe data and produces a report comparing your genome to the “ClinVar” database – a public compilation of publish reports and databases.

This might uncover reports about to rare variants with potentially dramatic effects: people typically carry several “recessive diseases”, and this report might uncover some of yours. But it might also uncover mistakes in the literature! Research is messy, and so is this. To help everyone sort through the evidence, Genevieve also invites users to edit collaborative notes regarding reported effects.

As such, the tool is not a clinical tool, no more than Wikipedia is! It’s open source, freely shared, and intended for collaborative learning. It’s my own personal project – and I’ve extended it to enable private data analysis, and empower more folks to explore their data.

Today is my first day as Executive Director of Open Humans Foundation. I am honored and thrilled to be taking the helm! As Open Humans co-founder I’m a familiar face, but I’d like to take this opportunity to re-introduce myself – and to share my vision.

How I got here probably begins with my love for creating and sharing knowledge.

As an early biotech graduate student, I stumbled into Wikipedia. I edited articles, created diagrams, and improved knowledge. Genetics was a theme: a reflection of my graduate work, and a topic I’d loved since high school. I gave the Genetics page a complete remodel – featured article in 2008! I helped One Laptop per Child create an offline Wikipedia for hundreds of thousands of children. I also created a page for my favorite mutation, a thing of history and beauty: Double-flowered.

This love for knowledge sharing – and for genetics – drew me, belatedly, to another project in the lab: George Church’s Personal Genome Project (PGP). (I was already in George’s lab. My thesis was mostly about DNA methylation.) George’s vision for the PGP was radical: open sourcing ourselves. He invited individuals to publicly share their genomes, health records, cell lines, and more. Participants took on strange, unknown risks. It was provocative and transgressive, and George had volunteered as its pilot participant: PGP #1.

In the years that followed, the Harvard PGP publicly released hundreds of genomes and enrolled thousands of participants. I became Director of Research for George’s project, and I was involved in every facet of operations. I created the project’s trait surveys, rewrote its entrance exam, fielded a multitude of inquiries, and helped organize sample collection events. I evaluated hundreds of genomes to create the “research reports” participants received, which explained the potential impact of variants in their genome. I was also first author on key papers for the project.

In addition, I became a liaison for the Harvard PGP and other projects that wished to work with it. When Jason Bobe expanded the GET Conference to add “GET Labs”, I was there as an interface between the researchers, the PGP, and the participants. My ongoing collaborations, through GET Labs and otherwise, have included American Gut (Rob Knight, UCSD), GoViral (Rumi Chunara, NYU), Critical Assessment of Genome Interpretation (Steven Brenner, UC Berkeley & John Moult, U of Maryland), the Personal Genomics Human Computer Interaction group (Orit Shaer, Wellesley & Oded Nov, NYU), and the PeopleSeq Consortium (Robert Green, Partners).

Through these, I started to see the bigger picture of what it means to study ourselves.

Genomes hold larger lessons. We have entered a world of data, where personal and meaningful information is being aggregated about us. But data sharing is foundering on privacy concerns. Silos of control have divorced individuals from their data, and reinforce a divide between the roles of participant and researcher.

This matters, because our data matters – it has the potential to make discoveries, to improve our health, and to empower us. But achieving these visions has begun to seem like an unreachable mirage.

I see a design problem. Our system for research was built in a pre-digital world. Open Humans is a redesign, restructuring how we aggregate data and perform research.

In Open Humans, individuals are the aggregators and data sharers.

And anyone can create a project on the site to work with members.

Projects can be citizen-led as well as traditional academic studies. Projects can provide data analysis tools, or can add new data. Data can come from anywhere – from research studies to third party APIs. A project can also invite members to share data broadly, e.g. in a “commons”, managed by a trusted entity. Researchers can build upon existing data streams. And studies can return their data – where it becomes a resource for personal discovery and future research.

It unlocks new opportunities for longitudinal research, for citizen science, for individual exploration, and for innovations that transcend any single study.

Our role is to be stewards: we have built an empty garden. You are its gardeners.

In this role, I hope you can trust us. Open Humans Foundation is a nonprofit, and my work as steward is supported by my Shuttleworth Foundation Fellowship. This funds me as an individual – and more – it grants me access to $250,000 in project funding each year. But for each $10 in project funding I seek from the Shuttleworth Foundation, I must give $1 of my own income. This is their bargain, and I’m taking it. I’m investing in this dream, and in this community garden.

What has grown already is full of serendipity and innovation. When we started, we seeded this with data we supported: genomic, microbiome, activity tracking, GPS. But now it grows beyond us. James Turner – a PGP participant – created an open source app to add Apple iOS “HealthKit” data. Continuous glucose monitor data has come from the Nightscout Project, a type 1 diabetes community. The Nightscout Foundation is creating a patient-led “data commons”. And Dana Lewis invites data donations from her own amazing community – the Open Artificial Pancreas System (OpenAPS) – and is bringing aggregated OpenAPS data to research teams at Stanford and Johns Hopkins. Newcomers wander in regularly now, bearing the seeds of nascent projects.

And so I invite you. Come, build. Plant your seeds – your data – your projects and ideas. Let’s grow something amazing together.