Think before You Click, Spit, and Share
Consumers’ genetic privacy perceptions in the context of direct-to-consumer genetic testing
Date and time
Location
Online
About this event
Tēnā koutou,
Privacy Foundation New Zealand, the Office of the Privacy Commissioner together with the Faculty of Law at Te Herenga Waka—Victoria University invite you to attend a webinar about genetic privacy.
In this webinar Dr Andelka M. Phillips and Dr Jan Charbonneau will introduce the world of direct-to-consumer genetic testing (DTC) for health and ancestry and its impact on genetic privacy. DTC services are the main way that the public can access their genetic data.
The webinar will be chaired by Liz MacPherson, Deputy Privacy Commissioner.
Date: Wednesday, 7 December 2022
Time: 1:00 pm – 2:00 pm
Format: Online webinar
A Zoom link will be emailed to registrants once registrations close.
The speakers will present findings from their 2022 general public survey of 1000 New Zealanders (20% Māori) and 1000 Australians (20% Aboriginal & Torres Strait Islanders), which explored attitudes towards genetic privacy in the DTC space and its effect on behavioural intention.
DTC is an industry that has created a market for genetic tests as commercial services, taking them outside of the oversight mechanisms that apply in a clinical setting and into the consumer space, where they have been subject to relatively little oversight.
The survey explores a range of privacy issues including levels of comfort with sharing genomic data, who should benefit from using it, who should have control over its use, and who should have access (including law enforcement). The privacy risks for consumers are significant, given the growing interest by law enforcement in both New Zealand and Australia to use this data for criminal investigations.
This research was funded by the University of Waikato and Genomics Aotearoa.
About the speakers:
Dr Andelka M. Phillips, TC Beirne School of Law, University of Queensland and HeLex Centre, University of Oxford
Dr Andelka M. Phillips is a Senior Lecturer in Law, Science and Technology at the TC Beirne School of Law, University of Queensland and a Research Associate at the University of Oxford’s Centre for Health, Law, and Emerging Technologies (HeLEX). Dr Phillips’ research interests are broadly in the areas of technology, health, and privacy law. She is particularly interested in the governance of new, emerging, and future technologies and their impacts on people, the environment, and the planet.
Dr Jan Charbonneau, Centre for Law & Genetics, University of Tasmania
Dr Jan Charbonneau is a Law Lecturer and Adjunct Researcher in the Centre for Law and Genetics in the Faculty of Law at the University of Tasmania in Australia. She is semi-retired, having taught marketing and law for over thirty years at universities in Canada, Hong Kong, New Zealand, and Australia. Recently her research work has focused on the direct-to-consumer genetic testing industry (DTC), focusing on the intersection of medical, consumer and research ethics, from both a regulatory and consumer behaviour perspective.