Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.
Skip to main content

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: Design and analysis of prevalence surveys in low-resource settings

Tuesday, 25 February 2020, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

WEH/Ethox Seminar

Wednesday, 26 February 2020, 11am to 12.30pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF

HERC Seminar: Learning healthcare systems for cost-effective precision oncology.

Thursday, 27 February 2020, 12pm to 1pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF

The Global Response to the Novel Coronavirus (SARS-CoV-2) Outbreak

Thursday, 27 February 2020, 2.30pm to 4pm @ Seminar rooms, Big Data Institute

Richard Doll Seminar: The Risk of Everything – using linked electronic health records to develop and validate risk prediction tools for use in clinical care

Tuesday, 03 March 2020, 1pm to 2pm @ Richard Doll Lecture Theatre, Richard Doll Building, Old Road Campus, OX3 7LF

WEH/Ethox Seminar: Building research capacity through North-South Partnerships: some ethical reflections and a social justice agenda

Wednesday, 04 March 2020, 11am to 12.30pm @ Seminar room 0, Big Data Institute, Old Road Campus, OX3 7LF