New Open Humans Network Democratizes Patient Data for Research
March 25, 2015 in News
The Open Humans Network, funded by the Robert Wood Johnson Foundation and the Knight Foundation, aims to foster medical innovation by democratizing health-related data that traditionally have been kept private, according to Fortune (Lorenzetti, Fortune, 3/24).
Specifically, the database encourages participants to volunteer for studies after sharing and making public certain biological data, such as:
- Gut bacteria; and
According to Newsweek, information on the website is “highly identifiable” and “privacy cannot be guaranteed” (Newsweek, 3/24). Further, when volunteers join studies through the website, they agree to their data — including their names — being shared with other projects and researchers who can contact them for follow-up (Begley, Reuters, 3/24).
To participate, volunteers must be at least 18 years old and a U.S. citizen or permanent resident. In addition, individuals must pass a quiz, demonstrating they are aware of potential risks, such as identity theft, discrimination and embarrassment.
Members can delete their data or entire profiles at any time. However, if third parties have made copies of the information, that data will still exist.
Researchers can apply to use participants’ data in studies. All research projects must be approved by the Institutional Review Board (Newsweek, 3/24).
Currently, participants can volunteer for three ongoing studies:
- American Gut, which studies the links between gut bacteria and disease;
- GoViral, which identifies diseases circulating around parts of the U.S. during flu season; and
- The Personal Genome Projects, which studies links between DNA variations and health (Reuters, 3/24).
Jason Bobe, director of the Open Humans Network project, said, “When people can access and share their health and personal data beyond the limit of just one research study, there is tremendous added potential for advancing human health and knowledge” (Newsweek, 3/24). He added, “You become a richer resource if your data are shared among as many scientists as possible” (Reuters, 3/24).
However, Jon Baines, chair of the National Association of Data Protection and Freedom of Information Officers, raised privacy concerns about the project, noting that people tend to share too much personal information.
He said, “Open access to identifiable genomic data would, I would suggest, put individuals at potential risk of it being abused, or of them being discriminated against” (Newsweek, 3/24).