Ethox Seminar: Genes wide open - A qualitative study to explore the motives, experiences and attitudes of individuals who openly share their genomic data
Direct-to-consumer genetic testing companies (DTC-GT) market their service as tools for empowering consumers to make more informed and, arguably, better decisions about their health, wellness and lifestyle.

Their business model, however, also entails collecting large privately owned genetic databases which can be exploited commercially. Openly sharing genetic and genomic data, in turn, carries highly valuable scientific yield and bears the potential to not only serve as a primary research tool for established scientists but also pave the way for participant-driven research initiatives. The aim of this study was to explore the motives, experiences and attitudes of individuals who openly share their DTC-GT results without any privacy protection and without institutional oversight on the non-profit platform openSNP. In this talk I will report the findings of a qualitative follow-up study to a structured questionnaire, with a view to support the further exploration of open genetic data sharing and its implications for genetic privacy and genomic utility.
Date: 21 February 2018, 11:00 (Wednesday, 6th week, Hilary 2018)
Venue: Big Data Institute (NDM), Old Road Campus OX3 7LF
Venue Details: Seminar Room 0
Speaker: Tobias Haeusermann (Health Ethics and Policy Lab, Epidemiology, Biostatistics and Prevention Institute, University of Zurich)
Organising department: Nuffield Department of Population Health
Organiser: Graham Bagley (University of Oxford, Nuffield Department of Population Health)
Part of: Population Health Seminars
Booking required?: Recommended
Booking email: jane.beinart@ethox.ox.ac.uk
Audience: Members of the University only
Editors: Graham Bagley, Hannah Freeman