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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

Assessing separately the risks and benefits of radiotherapy

Tuesday, 30 May 2023, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

Infectious Disease Seminar Series: What can we learn from fakes?”

Monday, 05 June 2023, 1pm to 2pm @ BDI Seminar Room LG 0-1, Old Road Campus, Headington, OX3 7LF

Infectious Disease Seminar Series: Evidence on the effectiveness of non-pharmaceutical interventions

Monday, 12 June 2023, 1pm to 2pm @ BDI/OxPop Building Seminar Room LG 0-1, Old Road Campus, Headington, OX3 7LF

Alcohol phenotypes and how they are related to fMRI derived brain health measurements

Tuesday, 13 June 2023, 11am to 12pm @ Big Data Institute LG 0 Seminar room