California’s SB 980 Would Codify Strong Protections for Genetic Data
Author: John Verdi (Vice President of Policy) This week, SB 980 (the “Genetic Information Privacy Act”) passed the California State Assembly and State Senate, with near unanimous support (54-10 and 39-0). If signed by the Governor before the Sept. 30 deadline, the law would become the first comprehensive genetic privacy law in the United States, […]
Associated Press: Schools debate whether to detail positive tests for athletes
In a recent article published by the Associated Press in The Washington Post and The New York Times, the Future of Privacy Forum warns of the privacy risks of sharing information about positive COVID-19 tests among students, particularly student athletes who have already returned to campus to prepare for the upcoming sports season. Read an excerpt […]
Privacy Best Practices for Consumer Genetic Testing Services
The Best Practices provide a policy framework for the collection, protection, sharing, and use of Genetic Data generated by consumer genetic testing services. These services are commonly offered to consumers for testing and interpretation related to ancestry, health, nutrition, wellness, genetic relatedness, lifestyle, and other purposes.
FPF Statement on Privacy and Wearables
A new report released today by the Center for Digital Democracy and the School of Communications at American University focuses on privacy and wearables. As a recent HHS report made clear, the data collected by most wearables is not regulated to the same degree as information you provide to your doctor. But several mechanisms have ensured that many health and fitness apps respect users’ data – the leading app platforms impose strong privacy requirements, barring sale of sensitive data and requiring enhanced notice.
Future of Privacy Forum Releases Best Practices for Consumer Wearables and Wellness Apps and Devices
Washington, DC – Today, the Future of Privacy Forum (FPF) released Best Practices for Consumer Wearables and Wellness Apps and Devices, a detailed set of guidelines that responsible companies can follow to ensure they provide practical privacy protections for consumer-generated health and wellness data. The document was produced with support from the Robert Wood Johnson Foundation and incorporates input from a wide range of stakeholders including companies, advocates, and regulators.