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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.

Richard Doll seminars IN Public health and epidemiology

 Richard Doll

Forthcoming events

Infectious Disease Seminar Series: Evolutionary drivers of antibiotic resistance in pathogen populations

Monday, 03 October 2022, 1pm to 2pm @ BDI/OxPop Building Seminar Room LG 0-1, Old Road Campus, Headington, OX3 7LF

What is new in Polygenic Risk Scores?

Tuesday, 11 October 2022, 1pm to 2pm

Infectious Disease Seminar Series: Lessons learned - Will suffering through one pandemic help prevent another?

Monday, 17 October 2022, 1pm to 2pm @ Big Data Institute / OxPop Building, Old Road Campus, Headington, OX3 7LF

Infectious Disease Seminar Series: Global molecular epidemiology of HIV-1

Monday, 31 October 2022, 1pm to 2pm @ BDI Seminar Room LG 0-1, Old Road Campus, Headington, OX3 7LF

Infectious Disease Seminar Series: COVID-19 and Kids: what have we learnt after 3 years?

Monday, 07 November 2022, 1pm to 2pm @ BDI Seminar Room LG 1, Old Road Campus, Headington, OX3 7LF