Future Directions for DTC Governance

This chapter discusses possible future directions for improving governance of the DTC industry. It includes a note directed at readers who are considering purchasing a DTC test, which draws upon guidance released by the Office of the Canadian Privacy Commissioner. It also includes a number of suggestions for reform.

Clicking Away Rights in DNA: A Review of DTC Contracts

This chapter provides a summary of a review of the wrap contracts of DTC companies providing genetic tests for health purposes. It identifies a number of terms that are problematic from a consumer protection standpoint and argues that certain terms commonly included in DTC contracts are liked to be challengeable on the grounds of unfairness under UK law.

The Rise of Personal Genomics: An Overview of the Direct-to-Consumer Genetic Testing Industry

This chapter begins with an overview of the industry, including a discussion of the different types of tests available and prominent companies. It divided into sections addressing each of the different types of tests available. These discuss the companies operating and the issues which each type of test raises, including the implications for consumers. This draws upon the author’s research on the industry, some version of her dataset are available via Zenodo. https://zenodo.org/record/1183565#.Xfa18i1L0_U

Direct-to-Consumer Genetic Testing and Regulating Disruptive Technology

How many contracts have you read today? This chapter provides an introduction to the work. It sets out the aims of the book and seeks to highlight the reality of contracting online that we all face, ie. the volume of contracts we encounter and our tendency not to read them, mentioning a number of examples of problematic clauses being inserted into contracts, such as GameStation’s Immortal Soul clause. It provides brief guidance for readers from different disciplines, directing them to particular chapters. It also provides an overview of the sources of law that could be applicable to the industry in the UK and EU.

Addendum

This Addendum was added in order to keep the book as current as possible. It includes a final note on recent developments. It also includes two appendices: the commitments made by the Association of British Insurers in its Code of Practice on Genetic Testing and Insurance; and the Privacy Best Practices released by the Future of Privacy Forum

The Science Behind that Click of the Mouse

This chapter provides a brief introduction to the scientific developments that have enabled the personal genomics industry to develop. This is intended for a general audience and those with a background in genetics could skip this chapter.

Privacy, Data Protection and Security in the Context of Direct-to-Consumer Genetic Testing Services

This chapter provides a broad overview of privacy, data protection and security issues raised by DTC services. This includes discussion of the EU’s General Data Protection Regulation (GDPR), the UK’s Data Protection Legislation, and a brief discussion of US and Canadian Privacy Law. It also covers secondary use of genetic databases, the Future of Privacy Forum’s Privacy Best Practices for Consumer Genetic Testing Services, and Indigenous Peoples and Data Sovereignty.