Fairness and Transparency in Emerging Health Markets: Protecting New Zealanders from the Risks of Personal Genomics
This legal research will explore the legal and policy implications of Consumer Data Rights in the context of genetic testing services, identifying policy recommendations and educational resources for the wider public.
About the project
The market for DNA tests poses significant risks for its consumers. These risks are particularly paramount for consumers with unique risks including and Indigenous Peoples. This project tackles such concerns, aiming to inform policy-makers and contribute to the public discourse regarding the proper oversight of this market. Furthermore, the project seeks to encourage academics and policy-makers to think about consumer protection law in a more nuanced way. In doing so, it highlights two needs. The first is to regulate particular dynamic and evolving markets – such as personal genomics – rather than relying on general protections. The other is to consider the harm to specific consumers with unique risks– rather than assuming that consumers are homogenous.
The project will examine the literature, conduct a comparative analysis of legal and policy frameworks, survey recent international legal developments in policy proposals, and consult with stakeholder and expert consultation, to identify policy recommendations for Aotearoa New Zealand, and produce educational content for the general public.
$64,574 over 21 months in 2022 and 2023
About the researchers
Professor Samuel Becher (Victoria University of Wellington; LL.M, JSD, Yale Law School) is an internationally recognised consumer law scholar. He has written some 50 articles and book chapters. Professor Becher’s interdisciplinary research is widely cited by academics, policy-makers, and courts. His work has also been featured in various media outlets, including legal podcasts and YouTube, in more than 15 languages and 20 countries.
Dr Andelka M. Phillips (TC Beirne School of Law, University of Queensland and HeLEX Centre, University of Oxford, formerly at University of Waikato); LLM (1st Class Hons) (Auckland), DPhil (Oxon)) is an internationally recognised expert in Information Technology Law and Health Law, specialising in personal genomics. She is the author of Buying your Self on the Internet: Wrap Contracts and Personal Genomics (2019). Her work has been cited by the New Zealand Privacy Commissioner & New Zealand Law Commission. Her work is also frequently cited by international media, and in 2020 it was mentioned in Time magazine.