An “open-source” approach to accelerating human health advances is the common theme among a diverse group of medical science projects that have won six science awards honoring “excellence in participant-centered research” - a rapidly emerging field that aims to turn patients and healthy people into more active and more data-sharing participants in medical research. The awards will be given out at Harvard Medical School in Boston on April 25 at a scientific convening called GET Conference (“GET” stands for “Genomes, Environments, Traits”). “The winners of the GETy Awards are at the forefront of a research revolution that will radically accelerate the rate of human health advances,” says Jason Bobe, organizer of the GET Conference, and Executive Director of the nonprofit PersonalGenomes.org.
Jason Bobe
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"Open Humans" Launches Online Platform to Share DNA and other Medical Data
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.
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GETy Awards Celebrate Unorthodox Open-Source Approaches to Accelerating Human Health Advances
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More Research Volunteers Are Getting Their Medical Test Results. Should We Cheer — or Worry?
Volunteer for a clinical trial and your body will be poked, prodded, scanned, and analyzed. But you’re unlikely to get any of the results. A small but influential band of activists has been pushing hard to change that — and they’re starting to get traction. The research establishment has long opposed giving volunteers access to their data, even though that’s supposed to be part of the arrangement. Some worry that it’s too easy for laypeople to misinterpret test results, while others maintain that it’s a waste of resources to organize data for individual review...
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Open Humans Project Allows Volunteers to Share Their Personal Health Data
While many researchers encounter no privacy-based barriers to releasing data, those working with human participants, such as doctors, psychologists, and geneticists, have a difficult problem to surmount...A new project, Open Humans, seeks to resolve the issue by finding patients who are willing—even eager—to share their personal data. Read More »
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