Open Humans Network is launching soon. Led by Jason Bobe and Madeleine Ball of PersonalGenomes.org, OHN attempts to break down health data silos through an online portal that will connect participants willing to share data about themselves publicly with researchers who are interested in using that public data and contributing their analyses and insight to it. The portal will showcase public health data and facilitate its exploration and download. The Open Humans Network ultimately hopes to revolutionize research by making it easy for anyone to participate in research projects and facilitating highly integrated, longitudinal health data.
We had an opportunity to ask Executive Director Jason Bobe a few questions.
1. When do you anticipate OpenHumans.org will launch?
Jason Bobe: Colleagues, friends and family will be invited to our private alpha in January 2015. After evaluating key features for a month or two, we expect to formally launch and invite the public to become members of the Open Humans community.
2. What kind of functionality/capability will be available at launch?
Jason Bobe: “People will be able to create an Open Humans profile and populate it with their data generated by several leading research studies and activities, including 23andme, the Harvard Personal Genome Project, American Gut, and GoViral. People can then choose to “open source” some or all of their data, making it a public resource with a CC0 public domain dedication. Or, keep a private archive of their data and share it with other members, peer-to-peer. We think participant-mediated data sharing is an exciting new paradigm that could transform how people engage in research.”
(Editor’s Note: CC0 is a Creative Commons designation: https://creativecommons.org/publicdomain/zero/1.0/)
3. What benefits are you hoping to see as a result of OpenHumans.org ?
Jason Bobe: We have two main goals: (1) advance health and participatory research by enabling people to access and share their personal data that would otherwise be left to languish in private data silos and (2) assist and reward researchers who practice “equal access” – where raw data generated about a research participant is shared with that individual. We want to connect people with data. Overall, participatory research and open science are close to our hearts.”
More info: http://openhumans.org/
This article was originally run in the new People + Data Digest, subscribe to the digest at http://eepurl.com/baKdxr
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