With the rise of smartphone apps and connected devices, many aspects of our lives are now digitized. Could we use these data to empower us and participate in collaborative research? Bastian Greshake Tzovaras is convinced that “basically everything is better if you add open in front of it” : His idea is to build a community science model that enables individuals to selectively share their data with others. This biologist-turned-informatician developed a taste for bioinformatics and computational biology while doing his master’s degree in Ecology and Evolution at Frankfurt. He has a long history in citizen science project : OpenSNP, co-founded in 2011, is a crowdsourced open data project that facilitates both citizen science projects as well as traditional academic research :
We wanted to have a place for people to share genetic data from personal genetic testing, and make it available for researchers.
Bastian chose to do full time research in open science after his PhD in Bioinformatics. He joined the team of Open Humans Foundation, an organization dedicated to empowering individuals and communities around their personal data, and then started a long-term fellowship at CRI. His project is now to “use personal data that people collect not only from genetic testing, but from wearable devices, geo-location, phone records… so that people can understand the data they collect and they can do research both individually, as well as collectively.” He joined the team of Open Humans, a platform for participant-centered research and personal data exploration. The community brings together more than 8,000 members : researchers, patients, data scientists and citizen scientists…All participants can explore their data and share it with projects from citizen scientists and academic researchers. Among projects, we can find a diary for patients to collect data about their symptoms and analyze their disease progression. Another example is one person who is interested in tracking hearing sensitivity over the day. Importantly, access to personal data are private and secured. According to Bastian, beyond a huge potential for scientific research, “exploring our own data could offer a great way to acquire more data literacy : it gives us the choice of which data share with others and under which conditions.”