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, or 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.

About Jason Bobe

I am director of the Sharing Lab at the Icahn Institute at Mount Sinai School of Medicine and Executive Director of PersonalGenomes.org, a 501(c)(3) nonprofit that coordinates the Personal Genome Project. I also co-founded DIYbio.org, OpenHumans.org, and produce the annual GET Conference.

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