We would like to invite Open Humans members to attend the 2016 GET Conference and GET Labs!

On April 25th and 26th, leading thinkers, scientists, and participatory researchers will gather in Boston at Harvard Medical School for two days of interactive science and amazing talks.

• Tickets for GET Labs exclusively available to ALL Open Humans members (and ONLY Open Humans members) for a nominal fee of $16! Becoming a member just takes a minute.
• Tickets for the GET Conference are typically $299, but attendance is FREE for qualifying Open Humans members!

GET Labs on April 25th

This is an exclusive event for members of the Open Humans community!

What is “GET Labs”? This event is all about advancing science through direct participation. We bring together participants and researchers for a day of interactive labs. If you’ve never been, it’s a unique experience! Our community has helped advance all kinds of research, everything from viral profiling, perfect pitch, ancestry, fitness sensors, user interface design for genome reports, and – probably most popular last year – face mites! (Yep, turns out we all have Demodex mites.)

Fifteen research studies are already planning to attend, and the list is sure to grow. As in years past, the Harvard PGP, GoViral, and American Gut team will attend – and they’re planning to share free microbiome kits with qualifying members!

It’s also a chance to meet other Open Humans members! GET Labs invitations are open to ALL Open Humans members – and ONLY Open Humans members! – for a nominal fee of $16.

Click here to register for GET Labs!

The day will close with our first ever GETy Awards ceremony, honoring excellence in participant-centered research, followed by a reception.

GET Conference on April 26th

We’ve got amazing talks & discussions lined-up this year! Come learn from leading experts about:

• Integrated Omics Profiles
• Microbiomes, Health, and Built Environment
• AI & Medicine
• Networked Biology

Part of what makes the GET Conference amazing is how the audience truly bridges researchers and participants. Each year, we reserve around half of the seats for participants from our community, as a thank you for engaging with us and collaborating in the creation of culture of participatory research. For qualified members, registration is free: all we ask is for a donation in the amount you can afford. For everyone else, tickets are $299.

To learn more, click the button below and look at the “special opportunity for Open Humans” on the registration page for how to qualify for your FREE Ticket.

Click here to register for the GET Conference!

As you can see, this year’s events are not to be missed. We hope you can make it! Full agenda here.

We’ve added two exciting new features to Open Humans: User-to-user messaging and a 23andMe import!

User-to-User Messaging

Some of you have expressed an interest in being able to contact your fellow Open Humans members. Well, now you can!

How to contact another member:

• Go to a member’s public profile page (e.g. as linked on our members list).
• If that member allows emails, you’ll see a “Contact Member” button.
• Click this, log in if necessary, and follow the instructions.

23andMe Import

Have you gotten a DNA test from 23andMe? Do you plan to? You can now import and share your results on Open Humans! and if you are feeling stressed because the results have gotten to you then I suggest getting a foot massagers compared which is something that will maintain you relaxed.

How to import 23andMe data:

• Make sure you’re logged in to Open Humans.
• Go to the 23andMe upload page.
• Follow instructions to download your 23andMe raw data.
• Upload your 23andMe raw data.
• We’ll process and remove identifiers, but genetic data is still potentially identifiable!

As more people import 23andMe data, we expect researchers will want to work with you in new and interesting ways!

As with other data, this data is private by default. So, if you want to share this data publicly you’ll need to enroll in the Public Data Sharing study. Once enrolled, the public sharing toggle will be unlocked on your research data page, enabling you to choose certain files you want to donate to the public domain.

Some people never struggle with their weight. Other people seem to gain a pound just by thinking of cheesecake, but they never get a mosquito bite. Or they can’t metabolize certain antibiotics – or over-the-counter painkillers. While it’s tempting to blame our genes for everything, we shouldn’t.

According to Rob Knight, co-founder and lead investigator of Open Humans Research Partner American Gut, maybe we should blame – or thank – our microbiome!

American Gut is the world’s largest open-source, crowdfunded science project. Its objective is to study certain microbes and learn how they impact disease, wellness, and even human behavior. Microbes are the tiny organisms that live in and on our bodies (plus everywhere else). They’re much more plentiful and variable than our DNA, and researchers are discovering that they play a huge part in our resistance to — and our resilience from — numerous health issues, including asthma, rheumatoid arthritis and cardiovascular disease. It’s the cutting edge of research, and could be a strange-but-cool gift if you’re still looking for something special.

American Gut participants have the opportunity to find out what’s lurking in your gut, mouth, and on your skin by using a sample kit that you purchase for $99. These contributions allow Rob Knight and his team to study the relationship between people’s health, habits and their microbial diversity. There’s tremendous statistical power in a study with a population sample in the thousands, and, in just 3 years, American Gut has amassed a participant base of over 10,000 people!

One big change for American Gut this year is that it moved from the University of Colorado at Boulder to the University of California at San Diego. Dr. Knight wanted to bring his lab closer to the San Diego Supercomputer Center and the Scripps Research Institute since analyzing microbiomes requires state of the art computation and bioinformatics. Being in California also provides the opportunity to collaborate with different investigators.

In October, Dr. Knight and his researchers celebrated the fact that American Gut has now received over $1 million in donations. This is a huge accomplishment for any research study, and especially one that asks participants to collect their own samples!

Additionally, the American Gut team has been making plans to expand internationally.Since they already have sister projects in Australia and Britain, we’re excited to find out where they head to next. But don’t think that you have to wait to tell your friends overseas: American Gut is the only Open Humans Research Partner that accepts international participants. It also accepts samples from most pets, in case any of you are curious about how your gut microbiome compares to your dog or cat’s!

To date, American Gut has released the de-identified data from ~7000 sample kits, and the number of participants continues to grow!If you want to learn more about the project, check out this recent Quantified Body podcast with Rob Knight or his TED Talk from early last year.

So, if you’re struggling with what to give your health-conscious or scientifically-curious friends and loved ones this season, consider gifting an American Gut kit! It allows people who think they know everything about themselves to learn just a little bit more. Plus, they get to make a contribution to science! What could be better than that?

• Precision Medicine: Who Will Own the Data?
  • Eric J. Topol et al., Medscape, November 24

• Why we should stop talking about data “sharing”
  • DNA Digest, Barbara Prainsack, December 1

• 23andMe Genetic Service Now Fully Accessible to Customers in New York and Maryland
  • Newswise, December 4

• The First Quantified Brain
  • Rosie Cima, Priceonomics, December 10

• Personalized Medicine: A Faustian Bargain?
  • Eleonore Pauwels and Jim Dratwa, Scientific American, December 10

As an Open Humans member, we wanted to share some news and updates from one of our partner studies – the Harvard Personal Genome Project!

About Harvard PGP

The Harvard Personal Genome Project (or PGP) is, in many ways, the spiritual parent of the Open Humans project. The PGP began in 2005 with a proposal by George Church. Its mission is to advance personal genomic research – the study of everything in our DNA – through public data sharing. It hosts genomic and health data from thousands of participants who understand that their data, by its very nature, is potentially identifiable.

Interested in participating? You can sign up here: https://my.pgp-hms.org/signup

Breaking the $1000 genome barrier!

This fall, Veritas debuted an offer for $1000 genome sequencing exclusive to Harvard PGP participants! The PGP’s resources are limited, and it has many more volunteers than it can sequence at the moment. Now participants have a faster way to get their genome in the hands of researchers: By getting a genome through Veritas, then donating it to the PGP and/or Open Humans.

Data visualization

Earlier this year, Abram Connelly developed an interactive tool called “Untap” to explore Harvard PGP data. Abram is a PGP participant, a member of the PGP staff, and a researcher at Curoverse, and he wanted to make the PGP data more accessible to all. His coworker Nancy Ouyang, also a PGP staff member, wrote a great summary of using Untap for the PersonalGenomes.org blog.

Genome interpretation

A community of genomic researchers called the Critical Assessment of Genome Interpretation (or “CAGI”) launched an experiment using PGP data. This experiment challenges researchers to match PGP participant genomes to health and trait profiles. The challenge is open until December 7th. CAGI is a great match for PGP data because the methods can be “open source”: both algorithms and data can be completely open and available to all.

Celebrating 10 years at GET

The PGP celebrated its 10th anniversary in September at the GET Global Conference in Vienna, Austria. “GET” stands for “Genomes Environments and Traits”, and the conferences are traditionally very participant-centric: the GET Labs events invite attendees to work with other research groups and were an inspiration for Open Humans. In 2015, GET went farther afield and was hosted by a PGP member site (Genom Austria), reaching out to the global community. Open Humans’ co-founder Madeleine Ball also spoke about data access and sharing as part of the session on Society. We’re looking forward to meeting participants – and Open Humans members – at the next GET Conference in Boston, in April 2016.

• Tech Companies Are Not Trusted with Health Data
  • Antonio Regalado, Technology Review, November 16

• Here’s why ‘everyone should have their genome sequenced yesterday’
  • Kevin Loria, Australian Business Insider, November 19

• How Big Data Is Changing Healthcare
  • CXO Today, November 24

• Deborah Estrin’s ResearchKit for Android project taps Mole Mapper as first app
  • Jonah Comstock, Mobi Health News, November 24

• Poll: Most Americans Would Share Health Data For Research
  • Scott Hensley, NPR, January 9

• ‘Your Genome Isn’t Really Secret,’ Says Google Ventures’s Bill Maris
  • Eric Newcomer, Bloomberg, October 20

• 23andMe relaunches its expanded DNA spit tests after FDA-mandated pause
  • Marco della Cava, USA Today, October 21

• Bringing iPhone-style Medical Research to the Android World
  • Steve Lohr, New York Times, November 12

• I Had My Whole Genome Sequenced — And so Should you
  • Stephane Budel, Huffington Post, October 13

• 23andMe Wins A Second Life: New Business Plan Scores $115 Million From Investors
  • Matthew Herper, Forbes, October 14

• The Crowdsourcing Site That Wants to Pool Our Genomes
  • Ed Yong, The Atlantic, October 14

• New Apple ResearchKit trials focus on epilepsy, autism and skin cancer
  • Laura Lorenzetti, Fortune, October 15

• Cops Are Asking Ancestry.com and 23andMe for their Customers’ DNA
  • Kashmir Hill, Fusion.net, October 16

October is not only the month of witches, vampires, zombies and pumpkin spice lattes…

It’s also the start of flu season –- and a great time to join the GoViral study!

GoViral is a study for testing viruses. Participants are sent kits and, when they get sick, can use these kits to collect and send in virus specimens. Both aggregate and individual results are returned: Find out what viruses were in your area – and which virus got you sick.

Entering its third year this season, the project is led by Rumi Chunara at New York University. GoViral is an Open Humans Research Partner, and we wanted to give you some updates on their work. The research has seen important progress so far. Back in 2013, Dr. Chunara wasn’t even sure whether participants could collect specimens at home and ship them to a lab in a timely manner without contamination. One of her first discoveries: They can! Check out the GoViral site for video demonstrations of how to collect saliva and nasal swabs – the whole process takes just a few minutes.

Due to this success, the GoViral team made further discoveries. For example, they discovered that they can detect viruses in samples taken as late as six days after symptoms first present themselves. This means that we all shed viruses – and therefore are contagious – for a longer period than most of us always assumed. So do your coworkers a favor and take that extra sick day from work!

By now, GoViral has processed over 500 specimens. What has been uncovered has largely corresponded with what is known from clinical data: Up to 20% of the population gets influenza each year and preventative measures – such as getting the flu vaccine and frequent hand-washing – are beneficial. The study has also shown, for the first time, a definitive concordance between nasal and saliva specimens. For more details, you can read the research report that the GoViral team published earlier this year: “Surveillance of Acute Respiratory Infections Using Community-Submitted Symptoms and Specimens for Molecular Diagnostic Testing”

GoViral continues to expand. One of the variables GoViral studies is geography, and in past seasons it has been concentrated on the Northeast United States. Whether it expands to new areas depends on how many people in that area sign up. Interested in having them join your area? Don’t just sign yourself up, let others know about it too!

The study is ongoing – and the more people involved, the richer the data.

Interested in contributing? Click here to join GoViral

• HHS Announces Proposal to Update Rules Governing Research on Study Participants
  • U.S. Department of Health & Human Services Press Release, September 2

• How Genome Sequencing Creates Communities Around Rare Disorders
  • Ed Yong, The Atlantic, September 21

• SJ Kids: What is a genome?
  • Joe Ruhl, Statesman Journal, September 29

• Seeking New Markets, Companies Offer DNA Testing at a Loss
  • Antonio Regalado, MIT Technology Review, October 1