Nature: 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. It aims to connect people with researchers, but provides no privacy guarantee.
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: