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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

Exploiting electronic health records to improve infection management

Monday, 03 June 2024, 1pm to 2pm @ BDI/OxPop Building LG seminar rooms

Title TBC

Tuesday, 04 June 2024, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, Headington, OX3 7LF

Prevention of Chronic Kidney Disease Progression

Tuesday, 11 June 2024, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, Headington, OX3 7LF

Festival of Global Health - Survivors

Wednesday, 12 June 2024, 4pm to 8pm @ Curzon Oxford, Westgate Shopping Centre, Oxford OX1 1NZ

Infectious Disease Epidemiology Unit (IDEU) Symposium 2024

Friday, 14 June 2024, 9.30am to 4.15pm @ Big Data Institute LG seminar rooms