Donate Your Health Data to Medical Science

You can now share your genome, health and microbiome info, and viral infection data to crowdsourced medical research projects. Cynthia Graber reports

 

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Some people donate their bodies to medical science upon their deaths, so that medical students can learn anatomy. Now researchers have come up with new ways that individuals can contribute their bodily information to medicine—while they’re still alive.

A nonprofit at Harvard called the Personal Genome Project lets you share your genome sequence and health data for the use of researchers around the world. And scientists at Harvard, N.Y.U. and U.C. San Diego have teamed up to spin off what they’re calling the Open Humans Network. This new venture has developed two projects so far. The first, called American Gut, allows you to contribute data about your gut microbiome, a hot topic of research. The second, called GoViral, lets you donate easy-to-collect specimens when you have the flu or flulike symptoms.

The goal is to greatly expand existing medical databases and to share them, to speed up understanding of diseases and development of treatments.

Privacy is certainly an issue. The project has built in security measures, but participants are alerted about potential risks in sharing such information.

There’s been a decline in recent years of volunteers for medical studies. The scientists behind the Open Humans Network hope this new project will encourage more people to provide their health data to advance medical research. For information, go to www.openhumans.org.

—Cynthia Graber

[The above text is a transcript of this podcast.]
 

Cynthia Graber is a print and radio journalist who covers science, technology, agriculture, and any other stories in the U.S. or abroad that catch her fancy. She's won a number of national awards for her radio documentaries, including the AAAS Kavli Science Journalism Award, and is the co-host of the food science podcast Gastropod. She was a Knight Science Journalism fellow at MIT.

More by Cynthia Graber

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