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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

UVBO Seminar - Nutrient timing and human health

Thursday, 24 October 2019, 1pm to 2pm @ School of Anthropology, 61 Banbury Road, OX2 6PE

NPEU Seminar - Understanding Challenges in Newborn Care to Improve Patient Outcomes

Monday, 28 October 2019, 2pm to 3pm @ Seminar room 0, BDI, Old Road Campus, OX3 7LF

Richard Doll Seminar - Prostate cancer screening and treatment: what is the trial evidence and linked epidemiology?

Tuesday, 29 October 2019, 1pm to 2pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF

Health Services Research Unit Methods Group – Clinical Outcome Assessments: Content validity and meaningful change

Tuesday, 05 November 2019, 10.30am to 11.30am @ L1 Meeting room, Richard Doll Building, Old Road Campus, OX3 7LF

Richard Doll Seminar - Cardiovascular research in the Tromsø Study

Tuesday, 05 November 2019, 1pm to 2pm @ Seminar rooms, BDI, Old Road Campus, OX3 7LF

WEH/Ethox Seminar - Psychology applied to genomics: understanding the utility of personal genomic information for physical and mental health

Wednesday, 06 November 2019, 11am to 12.30pm @ Seminar room 0, BDI, Old Road Campus, OX3 7LF