Data Rights and Consumer Contracts: The Case of Personal Genomic Services

Abstract

Companies in the personal genomics industry sell genetic tests to consumers over the internet. As such, the personal genomics industry gives individuals direct access to their genetic information, creating a market for DNA tests as consumer services. This study explores the legal and policy implications of Consumer Data Rights (CDRs) in the context of personal genomics services. Part I introduces the market for personal genomics. Part II discusses the key risks and threats this market poses to consumers. It considers how market and behavioural failures lead consumers to misperceive the market for personal genomics and undervalue CDRs. Part III elucidates the importance of CDRs for consumers in the specific context of personal genomic and genetic testing services. It further surveys the current regulatory landscapes in the EU, Australia, and New Zealand. Against this background, part IV outlines various policy recommendations. Concluding remarks follow.

Keywords: Data rights, privacy rights, consumer contracts, health services, personal genomics, genetic testing, economic and behavioral analysis