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‘Open Humans’ platform wants to democratize your DNA for better medical research

March 24, 2015, 3:06 PM UTC


In 2003, a team of researchers working for the Department of Energy and the National Institutes of Health completed a 13-year long effort called the Human Genome Project. The goal of the project was, among other things, to identify and map every gene in human DNA. For a while, the scientific community has been looking at the data and wondering, "So, what's next?" One answer is targeted therapy, medical treatments that do not only address symptoms, but also respond to a patient's genetic makeup. The past couple of years have yielded breakthroughs in this field. In 2011, a team of scientists at the University of Pennsylvania effectively treated leukemia patients by engineering their own white blood cells to fight the disease. Also in 2011, researchers in Britain achieved promising results in treating the genetic disease hemophilia B by injecting patients with a re-engineered version of the gene. 2012 brought even more advancements, using targeted therapy to treat inherited blindness. "Talk about transforming an industry," says George Day, co-director of the Mack Center at Wharton. "Big Pharma has always been pill-based," he says, meaning patients need daily dosage, whereas "gene therapy is one and done. "I think finally after 20 years, the promise of gene therapy is starting to be realized."
Illustration: Alfred Pasieka/Getty Images

Get ready to share more than photos of your latest vacation.

A new online platform launched Tuesday allows users to share data about their genomes, gut bacteria and other biological data with scientists and researchers.

The “Open Humans Network,” backed by the Knight Foundation and Robert Wood Johnson Foundation, aims to make more data available for researchers across studies. Its goal is to democratize valuable information that study leaders have typically held secret in order to prevent access by others. The fear is that a competitor could beat them to an important discovery.

Geneticist George Church of Harvard University said that such DNA data are also valuable to gene-testing companies — those companies can profit from the data too, he said.

But the mindset of secrecy slows down important medical research that could lead to breakthroughs on anything from cancer treatments to better flu vaccines.

Open Humans hopes to break that pattern by allowing universal access to the data stored on the site by researchers on other projects. Unlike other “de-identified” data, it will come with names and contact information attached so scientists can follow up with users.

Project director Jason Bobe compares it to other tech platforms: “It’s like open-sourcing your body,” he said.

The site currently hosts three studies that users can sign up for: American Gut looks at the relationship between gut bacteria and disease; GoViral identifies what viruses are circulating during flu season in the U.S.; and the Personal Genome Project, led by Church, gathers DNA data to make connections between genomic patterns and health.

Users allow any legitimate user to access their information when they sign up, which raises potential privacy concerns. In order to sign up, participants must pass a test showing they understand the risks of sharing private health information. If hacked, the leaked information could affect a person’s access to life insurance, or long-term care coverage.

—Reuters contributed to this report.
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