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

by Andelka M. Phillips

Overview

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.

Product Details

ISBN-13:	9781474422598
Publisher:	Edinburgh University Press
Publication date:	07/21/2019
Series:	Future Law: Challenges for Law, Technology and Culture
Pages:	320
Product dimensions:	6.14(w) x 9.21(h) x (d)

About the Author

Andelka M. Phillips is Senior Lecturer at Te Piringa, Faculty of Law, the University of Waikato and a Research Associate at University of Oxford's Centre for Health, Law and Emerging Technologies (HeLEX). 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.

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