Privacy Best Practices for Consumer Genetic Testing Services

Consumer genetic and personal genomic testing are tests that are marketed to Consumers by private companies. This type of testing has increased Consumers’ access to and control of their Genetic Data; empowered Consumers to learn more about their biology and take a proactive role in their health, wellness, ancestry, and lifestyle; and enhanced biomedical research efforts.  The Future of Privacy Forum’s Best Practices provide a policy framework for the collection, retention, sharing, and use of Genetic Data generated by consumer genetic and personal genomic testing services. These services are commonly offered to Consumers for testing and interpretation related to ancestry, health, wellness, genetic relatedness, lifestyle, compatibility, and other purposes. The document applies to Genetic Data, which includes any data that concerns information about an individual’s inherited genetic characteristics, including at least Raw Data, the Report of the Analyzed Data, and Self-Reported Health Data.