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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

Richard Doll Seminar - Some contemporary insights into cardio-vascular risk

Tuesday, 18 June 2019, 1pm to 3pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF

Ethox and WEH Seminar - Ethical preparedness and genomics in the headlines

Wednesday, 26 June 2019, 11am to 12.30pm @ Seminar room 0, BDI, Old Road Campus, OX3 7LF

HERC Seminar - Quality of Life Trajectories in Total knee Replacement Patients: What can they tell us?

Thursday, 27 June 2019, 1pm to 2pm @ Seminar room 0, BDI, Old Road Campus, OX3 7LF

Richard Doll Seminar - The ASPREE Study: The use of aspirin in older people without cardiovascular disease

Monday, 01 July 2019, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

NPEU Research Seminar - Women and cardiovascular disease: an odd couple?

Tuesday, 09 July 2019, 10.30am to 11.30am @ Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF