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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

Infectious Disease Seminar Series: Hepatitis B diagnosis, prevention and treatment: laboratory approaches to the elimination agenda

Monday, 06 February 2023, 1pm to 2pm @ BDI Seminar Room LG 0-1, Old Road Campus, Headington, OX3 7LF

Richard Doll Seminar: Edgar Sydenstricker: Household Equivalence Scales and the Causes of Pellagra

Tuesday, 07 February 2023, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

Ethox seminar- Feminist-Ethical Perspectives on Digital (Health) Technologies

Tuesday, 14 February 2023, 11am to 12.30pm @ Big Data Institute, Lower Ground Seminar Room 1, Oxford Population Heath, University of Oxford

Richard Doll Seminar - E-Freeze trial results

Tuesday, 14 February 2023, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

Infectious Disease Seminar Series: Informing on Neisseria gonorrhoeae treatment and management through pathogen genomics

Monday, 20 February 2023, 1pm to 2pm @ BDI Seminar Room LG 0-1, Old Road Campus, Headington, OX3 7LF