LONDON: Science needs your private data to speed up breakthroughs. Researchers find it increasingly hard to recruit participants. Apple did its part earlier this month with Research Kit and made an attempt to get users involved in medical studies. But it soon ran into its share of limitations.
Now Open Humans Network, a new public database, hopes to make medical research less opaque. The site finds a connection between people who want to share their medical data with researchers in need of that information. It relies on people who, given the choice, will feel encouraged to share their personal data on an open, research platform. Jason Bobe, project director, calls it “open-sourcing your body.”
As a public resource, the network doesn’t guarantee privacy. The data is valuable yet identifiable. The system hopes to draw people in, but it doesn’t take their private information lightly. If you’re willing to contribute data, you will first fill out a questionnaire to demonstrate your understanding of the risks involved in relinquishing control of your personal information.
After passing the consent process, you can create a member profile to participate in one of three listed studies: Harvard’s Personal Genome Project, American Gut’s study of microbial diversity and Go Viral’s surveillance of flu-like virus. And if you’re a researcher, you can tap into the public data available or connect your study to the network to access more members for their data.
According to the creators of the project, there are people who are willing to make their private information public for the greater good. The Knight Foundation and the Robert Wood Johnson Foundation invested $1 million in the network for its potential to change the way medical discoveries are made.
