This book examines the rise of the direct-to-consumer genetic testing industry (DTC) and its use of 'wrap' contracts. It uses the example of DTC to show the challenges that disruptive technologies pose for societies and for regulation. It also uses the wrap contracts of DTC companies to explore broader issues with online contracting.
Andelka M. Phillips is a Senior Lecturer in Law, Science and Technology at TC Beirne School of Law, University of Queensland, Australia. She is a writer and academic whose research interests lie in the areas of Information Technology Law and Health and Medical Law. She was formerly the Ussher Assistant Professor in Information Technology Law at Trinity College Dublin and the Convenor of Trinity College Dublin Law School’s Technology, Law and Society Research Group.
Innehållsförteckning
Table of Statutes Table of CasesDirect-To-Consumer Genetic Testing and Regulating Disruptive Technology IntroductionAims of This BookGuidance for ReadersWhat Is Personal Genomics or Direct-to-Consumer Genetic Testing?Summary of How DTC Services OperateBringing Disruptive Technology to the PublicData DelugeMethodologyHow Should the DTC Industry Be Regulated? The Policy Response to DateSources of Law Which Might Be Applicable to DTC in the UK and EUWhat Can Go Wrong?ConclusionThe Science behind that Click of the Mouse IntroductionThe Nature of Genetic Information and Genetic ExceptionalismRecent Advances in Genetic and Genomic ScienceConclusionThe Rise of Personal Genomics – Overview of the Direct-to-Consumer Genetic Testing Industry IntroductionOverview of the DTC IndustryHealth TestsAncestry TestingGenetic Relatedness TestingTesting for Athletic AbilityTesting for Child Talent and Testing of ChildrenSurreptitious (‘Infidelity’) TestingMatch Making TestingConclusionPrivacy, Data Protection, and Security in the Context of Direct-to-Consumer Genetic Testing Services IntroductionGeneral Data Protection Regulation (GDPR)The UK’s Data Protection LegislationPrivacy Policies and Notices and Website DesignUS Privacy LawCanadian Genetic Privacy LawSecondary Use of Genetic Databases – the Golden State Killer and BeyondIndigenous Peoples and Data SovereigntyPrivacy Best Practices for Consumer Genetics Testing Services (July 2018)ConclusionClicking Away Rights in DNA: A Review of DTC Contracts IntroductionChallenging Unfair Terms in DTC ContractsConclusionFuture Directions for DTC Governance Note for Readers Interested in Purchasing DTC TestsSuggestions for ReformFinal ThoughtsBibliography