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Abstract

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.

Forthcoming events

Methodological Issues in Nutritional Epidemiology and the Assessment of Preventable Mortality

Tuesday, 17 September 2019, 2pm to 3pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

Mini-Symposium: Large prospective studies of diet and health: research in the Nuffield Department of Population Health

Tuesday, 17 September 2019, 3.30pm to 5pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

Ethox/WEH Seminar - Newborn Screening for Sickle Cell Disease in Tanzania: Understanding ethical, social and resource based implications

Wednesday, 18 September 2019, 11am to 12.30pm @ Seminar room 0, BDI, Old Road Campus, OX3 7LF

Oxford-Peking University Joint Symposium on Precision Medicine

Thursday, 19 September 2019, 10am to 6pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF

CKB Workshop - Infections, immunity and cancer: aetiology and beyond

Friday, 20 September 2019, 1pm to 5pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF