Open Humans platform aims to connect people with researchers, but provides no privacy guarantee.
Open Humans, an online portal that encourages people in the United States to share their DNA and other medical data with researchers, launched on 24 March. The announcement generated discussion on social media that reflected both excitement and concerns over privacy. The website, created by researchers at New York University, the University of California in San Diego and Harvard Medical School in Boston, Massachusetts, is recruiting volunteers to provide personal health information for three separate research studies, with others potentially on the way. ‘American gut’ examines the diversity of the human microbiota, ‘GoViral’ profiles viruses that are linked to respiratory illnesses and the ‘Harvard Personal Genome Project’ collects genomic data. The participants are asked to provide a basic medical history as well as biological samples such as blood for DNA analysis and a swab of used toilet paper for the gut microbes study.
The project aims to gather a greater variety of health data than previous efforts and have it available across multiple studies. Users can make some or all of their data public, and they should be willing to “forgo assurances of privacy in order to make lasting contributions for scientific research”, according to the Open Humans research protocol. As Madeleine Ball, a geneticist at Harvard and principal investigator of the project, wrote on Twitter:
Although some researchers applauded the launch, others had reservations. Ross Whippo, a marine ecologist at the Smithsonian Environmental Research Center in Edgewater, Maryland tweeted:
Whippo, who has already registered with the site, said in an interview that he is still debating whether he is willing to share any personal information. “I’m all about open source data,” he says. “I was really excited about doing this, but then a second thought kicked in: ‘Am I really willing to part with my personal information?’”
Jason Bobe, project director of Open Humans, explains that each person who signs up for the project could potentially participate in a wide range of studies. At the same time, he says, “Privacy is a very personal decision.” He notes that Open Humans collects data only from participants who have signed consent forms that acknowledge a potential loss of privacy.
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Woolston, C. Website recruits people to share health data for studies. Nature 520, 9 (2015). https://doi.org/10.1038/520009f