Buying your Self on the Internet

Andelka M. Phillips is Associate Professor, School of Law, University of Leicester, UK, and Academic Affiliate, HeLEX Centre, University of Oxford, United Kingdom, and Affiliate, Bioethics Institute Ghent, Ghent University, Belgium.

• 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