Buying Your Self on the Internet: Wrap Contracts and Personal Genomics

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Buying Your Self on the Internet: Wrap Contracts and Personal Genomics

By Andelka Phillips
Edinburgh University Press August 2019

Specifications

ISBN-13
9781474422598
Publisher
Edinburgh University Press
Publication
August 2019
Format
Hardback
Jurisdiction
Scotland ? Countri(es) for reference only

Also available as

Paperback

Details

Examines the direct-to-consumer genetic testing industry's controversial use of 'wrap' contracts This book provides an introduction to the world of personal genomics and examines the rise of the direct-to-consumer genetic testing industry (DTC) and its use of 'wrap' contracts. It explores the different types of tests available and the issues that this industry raises for law and society.

Table of Contents

Table of Statutes
Table of Cases
1. Direct-To-Consumer Genetic Testing and Regulating Disruptive Technology
Introduction
Aims of This Book
Guidance for Readers
What Is Personal Genomics or Direct-to-Consumer Genetic Testing?
Summary of How DTC Services Operate
Bringing Disruptive Technology to the Public
Data Deluge
Methodology
How Should the DTC Industry Be Regulated? The Policy Response to Date
Sources of Law Which Might Be Applicable to DTC in the UK and EU
What Can Go Wrong?
Conclusion
2. The Science behind that Click of the Mouse
Introduction
The Nature of Genetic Information and Genetic Exceptionalism
Recent Advances in Genetic and Genomic Science
Conclusion
3. The Rise of Personal Genomics – Overview of the Direct-to-Consumer Genetic Testing Industry
Introduction
Overview of the DTC Industry
Health Tests
Ancestry Testing
Genetic Relatedness Testing
Testing for Athletic Ability
Testing for Child Talent and Testing of Children
Surreptitious (‘Infidelity’) Testing
Match Making Testing
Conclusion
4. Privacy, Data Protection, and Security in the Context of Direct-to-Consumer Genetic Testing Services
Introduction
General Data Protection Regulation (GDPR)
The UK’s Data Protection Legislation
Privacy Policies and Notices and Website Design
US Privacy Law
Canadian Genetic Privacy Law
Secondary Use of Genetic Databases – the Golden State Killer and Beyond
Indigenous Peoples and Data Sovereignty
Privacy Best Practices for Consumer Genetics Testing Services (July 2018)
Conclusion
5. Clicking Away Rights in DNA: A Review of DTC Contracts
Introduction
Challenging Unfair Terms in DTC Contracts
Conclusion
6. Future Directions for DTC Governance
Note for Readers Interested in Purchasing DTC Tests
Suggestions for Reform
Final Thoughts

Bibliography
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