19 - Privacy Best Practices for Direct-to-Consumer Genetic Testing Services

Summary

This chapter provides an in-depth analysis of the Future of Privacy Forum’s (FPF) “Best Practices for Consumer Genetic Testing Services” and reports on a systematic assessment of whether, and to what extent, industry leaders have implemented, and are in compliance with, the non-binding guidelines. The article describes a point-by-point analysis of the privacy documents of the eight DTC genetic testing companies that were either involved in drafting the FPF Best Practices or subsequently expressed public support for the guidelines. The results of the analysis indicate that although early signatories to these guidelines had privacy documents that complied with many aspects of the Best Practices and provided substantially more information to consumers than the industry as a whole, none of the companies appeared to be in compliance with all aspects of the guidelines. The chapter concludes with a discussion of the shortcomings and limitations of the FPF Best Practices as well as potential sources of government oversight under the existing legal framework in the United States, namely the Federal Trade Commission.