KnightBlog

The blog of the John S. and James L. Knight Foundation

Journalism
Mar 24, 2015

Donate your body to science - without having to die

Posted by Jason Bobe

The Open Humans founders used the video above to win a $500,000 grant in the Knight News Challenge / Health.

Jason Bobe is project director of Open Humans Network, a winner of Knight News Challenge: Health.

How many health research studies are you actively engaged in right now?

If you are like most Americans, the answer is probably “zero.” At the same time, there is broad public support for basic science and health research. Why the gap? The failure to inspire broad participation in research is something that ultimately impacts us all, and slows the pace of medical progress.

Regardless of your past engagement in research (or lack thereof), I hope you will check out a new project we launched today called the “Open Humans Network” at openhumans.org.

Open Humans connects research studies from Harvard University, New York University and the University of California, San Diego. Co-founded by me and Madeleine Ball, Ph.D., the Open Humans Network was a winner in Knight News Challenge: Health. We have also received support from the Robert Wood Johnson Foundation.

One fundamental goal of Open Humans is to give individuals greater access and control over personal health data. We believe there is tremendous potential for accelerating important discoveries by helping people liberate their own data from “silos” where they typically languish and by finding ways to put that data to good use.  

We are launching with three university-based research studies that explore different aspects of human biology and health:

  1. “American Gut” (UCSD): exploring microbial diversity of the human body;
  2. “GoViral”(NYU): profiling viruses related to flu-like illness;
  3. “Harvard Personal Genome Project” (Harvard) – collecting genomic, environmental and human trait data.

Open Humans will allow you to connect your account to these studies, import your data and give you options for sharing. You can contribute your data to people and causes you care about, for instance, students working on a classroom project about human DNA. We also give you the option to donate any given data set to the public domain, for the broadest possible uses. For example, you could share information with Wikipedians who need data to support an article. Your public genome  might also be used in a project to create a public reference standard to calibrate laboratory equipment worldwide for greater accuracy in scientific research.

We plan to add many new research studies over time, all committed to equitable data-sharing practices so our members can be confident that they will be able to access data generated about them.

What are the risks of sharing? What are the benefits? 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 public data sharing. Members who want to publicly share their data are given material to help them make more informed decisions, and must pass a quiz to demonstrate that they understand potential consequences. Preferences vary! When they’re given the option, we find many individuals are happy to share a variety of data for the greater good.

Think of Open Humans as an invitation to “open source yourself.” Or, as one participant quipped: an opportunity to donate your body to science, without having to die first! 

To find out more, or become a member, visit openhumans.org.

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